Hemihypertrophy & Hemihyperplasia

Dr. Greene, I’m hoping that you can help me find some information on the subject of hemihypertrophy. My darling daughter Jemma was diagnosed at the age of 4 months. She is now 4 1/2 years old, and although I have found an on-line support group for it, most of the members don’t know much about it either. We live in Australia and there is very little information to be found. I seem to be the one teaching Jemma’s pediatrician about what little I do know. At the moment, Jemma’s discrepancy is at 4 cm, but just 2 months ago it was 2 cm. Since she has been diagnosed the discrepancy has remained fairly consistent before her most recent growth spurt. It has been a long and lonely journey for us (the doctors here don’t seem to want to put me in contact with other Hemi families…if there are any), so any information gives me the backup I need to deal with this on our own. Once again thank you for taking the time for me in the chat today and I look forward to hearing from you. Take Care
Vonda (a.k.a. Potubby2) – Australia

Close-up of one leg of a little boy sitting on chair in green park. Coudl it be Hemihypertrophy and Hemihyperplasia?

Dr. Greene’s Answer:

Vonda, I’m so glad you asked! Most people are not aware of this medical condition. Hemihypertrophy, also called hemihyperplasia, is a greater-than-normal asymmetry between the right and left sides of the body. This difference can be in just one finger; just one limb; just the face; or an entire half of the body, including half the brain, half the tongue and the internal organs, or any variation in between. Someone with hemihypertrophy might have acne on only one side of the face. The skin is often thicker, and there may be more hair on the head, on the larger side. Rarely, children can have crossed hemihypertrophy (one leg and the opposite arm are larger than their partners).

Theories abound as to the cause of hemihypertrophy- perhaps it is increased blood flow or decreased lymph drainage, or nerve or hormone abnormalities. To date, not enough research has been conducted to choose between the theories. We don’t know the cause, but we do know that hemihypertrophy is usually not inherited. People with hemihypertrophy can go on to have healthy, normal children (Genetic Counseling, 1993; 4:119–126).

Hemihypertrophy is a key warning to be on the lookout for several kinds of cancers. Sadly, hemihypertrophy is often not looked for and not diagnosed until after the cancer has been discovered.

None of us is exactly symmetric. I recall seeing a series of fascinating magazine photos of famous movie stars. The photos were made by putting together 2 right sides and 2 left sides of their faces. It was surprising how much this changed their appearances. I had not noticed the asymmetry until it was removed.

During World War II, a series of United States Army recruits was carefully measured, and only 23% were found to have legs of equal length. The average difference was a little more than 1/4 inch (American Journal of Roentgenology, 1946; 56:616–623). One of our ears is usually higher than the other. The two eyes are slightly different. Only rarely are two nipples at the same height and the same distance from the midline.

All of us are asymmetric, and where normal variation ends and hemihypertrophy begins is controversial. Nevertheless, the distinction is very important because hemihypertrophy carries real risks. A definition first proposed over 20 years ago still seems to me to be the best general guideline: hemihypertrophy is a 5% or greater difference in size or length between some aspect of the right and left sides of the body (Clinical Orthopedics, 1979; 144:198–211). This translates into a leg-length difference of about 1/2 inch for a 1-year-old, about 1 inch for a 5-year-old, and about 1-1/2 inches for an adult.

As children with hemihypertrophy grow, the discrepancy between the two sides increases, but the relative proportions between the two sides usually remains the same over the long haul. Variations are found among different children, but in most children, the discrepancy about doubles between the first and fifth birthdays, which sounds like what has happened in Jemma.

Hemihypertrophy can occur as an independent condition (isolated hemihypertrophy) or as a part of a genetic syndrome (i.e. Beckwith-Wiedemann syndrome). Isolated hemihypertrophy is thought to occur in about 1 in 86,000 people, but this number may change as there is more agreement on a definition and more people looking for it. Some children with hemihypertrophy also have a genetic syndrome, such as Beckwith-Wiedemann syndrome, neurofibromatosis, Klippel-Trenaunay-Weber syndrome, or Proteus syndrome. Although these occur in the minority of children, each child with hemihypertrophy should be evaluated by a geneticist to look for associated conditions. Inguinal hernias, undescended testicles, and unusual kidneys (renal cysts or horseshoe-shaped kidneys) are more common in children with hemihypertrophy whether or not they have other syndromes.

Because hemihypertrophy is a disorder of the body’s normal controls of growth, it is not surprising that people with this condition can also have a higher rate of cancer. In one study, 168 children with isolated hemihypertrophy were very carefully followed to try to determine the true rate of cancer in children with this condition. Just under 6% developed childhood tumors (American Journal of Medical Genetics, 1998; 79:274–278). The most common cancer is Wilms’ tumor (of the kidney), followed by adrenal carcinoma and liver cancer (hepatoblastoma).

Because most of the cancers occur in the abdomen, the recommendation has been made (by the participants of the First International Conference on Molecular and Clinical Genetics of Childhood Renal Tumors–among others) that children with hemihypertrophy receive a screening abdominal ultrasound every 3 months until age 7 and, at minimum, a careful physical examination every 6 months until growth is completed (I prefer ultrasound). One proposed exception to this recommendation is in hemihypertrophy due to Klippel-Trenaunay Syndrome– the risk of Wilm’s tumor does not appear to be increased in these cases (Pediatrics 2004; 113:326-329).

Some argue that screening for cancer in children with hemihypertrophy is not cost effective because most children do not get these tumors and, even for those who do, these tumors are fairly easy to treat even if caught late. Be that as it may, if it were my child, I would insist on the screening.

The next most immediate concerns are the orthopedic problems that result from any leg-length discrepancy. Over time, scoliosis, or curvature of the spine, commonly develops. This disappears when the leg lengths are equalized, either with surgery or with special shoes or lifts. Close contact with a skilled pediatric orthopedist is a must.

Plastic surgery for facial discrepancies is sometimes warranted. The best people to contact are a craniofacial team or perhaps the people who repair cleft lip and palate in your area if no one has experience with hemihypertrophy. Computed tomography (CT) scans and computers can now be used to plan the repair for the best outcome (Journal of Oral and Maxillofacial Surgery, 1987; 45:217–222).

These, Vonda are the major issues. I’d be happy to talk with you more about them in chat.

Dr. Alan Greene

Dr. Greene is the founder of DrGreene.com (cited by the AMA as “the pioneer physician Web site”), a practicing pediatrician, father of four, & author of Raising Baby Green & Feeding Baby Green. He appears frequently in the media including such venues as the The New York Times, the TODAY Show, Good Morning America, & the Dr. Oz Show.

  1. Ashleigh

    My son has Beckwith weidemann Syndrome he also has a left hemi and macroglossia (enlarged tongue) which is wider on the right side. On his last scan they found what is called ureteracele which is apparently unrelated to the syndrome. although his bws is mild he still gets scanned every 12weeks. I was persistent when I found he had one leg slightly larger than the other and after much pushing I finally got him referred and diagnosed.

    Added:
    Reply
  2. Yessy

    Hi, my niece is 4 years old and was known to have hemi since birth. It was obviously noticeable. Her whole left leg and foot is 2 sizes bigger, but the same length. Her foot fingers are open as if it was a hand. We struggle with shoes because one is bigger than the other. The doctors said she needs surgery and may need to loose 1 or 2 fingers. Shes just 4 years old, but we’re glad we found a doctor that found a solution.

    Added:
    Reply
  3. Dung nguyen

    Hi, I am a mother of a beautiful baby boy whose leg was held in an abnormal position in the uterus and results in the foot turns inward. The orthopedic dr. confirmed that it’s not clubfoot. It is just the result of the foot was held that way for so long. However, the affected foot is also smaller and so is the calf. Has anyone experienced the same issue? i am so concerned as he is 3 week old and nothing seems to be improved. Is there any chance the foot will catch up in size when he grows up or is he having hemihypertrophy?

    Added:
    Reply
  4. Ajeet

    Hi,

    I noticed in teen age that my left chick is bigger than right and i never think its kind of some disease. i never feel that its growing or will grow in future.

    now i am above 26 and recently from last couple of months i am feeling that my whole left side is growing. still i am confusing that whats happening. i think that left side is increasing and right side is decreasing.

    Please anyone help what to do in this situation. what to eat what should not eat. reduce weight, exercise, sports, swimming is good or not good in this situation.

    Actually what is the treatment to live life easily. How to stop these organs from increase or decreasing?

    Looking forward to you kind response.
    Thank you.

    Added:
    Reply
    • Melo Jane Cator

      Hi,

      Do you happen to know the answer of your problem? Because I think we have the same problem. Im now 28 and I discover this when i was 5years old. I hope you can email me. We both can help each other. Im Jane by the way from the Philippines.

      Added:
      Reply
      • AJ Flora

        Hey I’m AJ from the Philippines also. Its good to know I have someone to share this problem too. I’m 18 years old and by any chance have you found an answer to out problem

        Added:
        Reply
  5. Holly

    Hello my daughter just turned 18 and was diagnosed with hemihypertrophy when she was about 3 months old. It affects her entire right side, her left cheek was thicker, arm is slightly larger, but it is mostly on her leg, her calf is about 5cm thicker. Her leg length difference is about 1/2 inch. She always had the ultra sounds on her stomach looking for wilms tumor until age 7. She seen genetic specialists and at her genetic apt at age 9 they did blood work. After the bloodwork I would call over and over for results no one would ever call me back. This was at the best of the best childrens hospital in Colorado. After about 10 attempts and just gave up and assumed all blood work was normal. I called to schedule her apt for her late teen appointment she told the genetic counsler that the blood work that was done when she was 9 was never revealed to me. She was very sweet and apologized and did tell me she tested positive for Beckwith Weiderman Syndrome. I was shocked that she had a positive test and no one reached out to tell me, even after all the calls. She is doing well, but did have lots of small fatty tumors appear on both legs last year. I had MRIs and ultrasounds and they went away on there own. She will follow up with the same genetic specialist next month for her late teen appointment.

    Added:
    Reply
    • Rachel C

      My daughter was just diagnosed with hemi hypertrophy today and she’s thirteen years old. The day after she was born I’ve noticed the difference in the widths of her legs. She had ultrasounds scans done and I was told for many years up until today what her diagnosis is. Every appointment we’d go to made me nervous because the doctors have never diagnosed her. We were told “we’re just going to watch her growth”. On one hand I’m relieved to have a diagnosis but on the other I don’t want this “disease” to affect her.

      Added:
      Reply
    • Cathy

      My son is now 30. He was diagnosed with Beckwith Weinderman syndrome at birth almost. He had 1/2 of his liver removed at 1. He had a tongue reduction operation at 4. He had 2 operations on his growth plates on his right leg. But he is well. A well balanced intelligent happily married young man. The best son in the world.

      Added:
      Reply
      • Thank you so much for sharing. It’s great to have examples of positive outcomes.

        Best,
        @MsGreene

        Added:
        Reply
        • Cathy

          I found this site by chance. Wish I knew about this 30 years ago. Our son and us were so lucky to have a wonderful caring paedtrician. In his federal letters to surgeon’s he always referred to our son as a beautiful young man. He said he was well balanced and that is due to the love and family he has. Yes positive comments give strength.

          Added:
          Reply
  6. Tierra

    Hi my soon to be 1yr old was diagnosed with Hemihypertrophy of lower extremity, he is going through his teething phase but he has yet to sleep through the night without waking up screaming in tears, sometimes he is veyond inconsolable and I was curious if him being so young and having this condition , is it rather painful for him? It would help me out ALOT and Explain alot of his discomfort at night if so. As his left leg is 4cm thicker at the thigh and 1in longer. He is scheduled for a visit with the orthopedic surgeon on june 22nd and for an abdominal ultrasou d shortly after that and then hopefully sooner than later he will see a geneticist at The Riley Center of Indianapolis, Indiana..I know at his age he cant tell me if his leg hurts or if its causing him great back pain but if anyone could help me and let me know if this is causing him any pain I would forever be in your debt and if so what can I do to ease it as surely baby tylonel or baby motrin wont help as its not meant to help with that depth of pain. Thank you.

    Added:
    Reply
    • Bonnie Lee

      Hello, I am a forty seven year old female. I have a leg discreprancy of seven eighths of an inch, that’s about three fourths of an inch plus two millimeters. I was diagnosed early as a four or five year old. I have scoliosis of the spine like an S shape if you’re looking at my back. The first bend is in the neck with the spine off center moving down and into the second bend in the low back, the convex bending down on the right side. My spine also has a slight twist in it. One hip is higher than the other. I was diagnosed as scoliosis and leg length discreprancy. I just found out today that my arm is shorter on the right side by an inch, half inch and n top part, half inch in the bottom part. It’s on the same side of the shorter leg. It would seem that one side of my body is shorter than the other. I’m reading up on hemihypertrophy. I didn’t have pain as a child as far as I could remember. I am thinking it’s because the muscles were still limber from the ordeal of making it through the birthing canal. At about eleven though, I started to get bad back aches from sitting Indian style playing cards all day long with my freinds. My freinds agreed that their back hurt too. Then in junior high it was very painful to run the mile. By my twenties my back would agrevate me. After pregnancy at age 26, I noticed a sore back. When my daughter was aged one I worked full time taking care of my handicapped nephew who was six years old. I strained my back in the thoracic region (mid-back) and a few days later it moved into the low back and I could hardly move the pain was tremendous and I had to still work, my sister was depending on me. I finished out the year in such horrible pain. I was seeing doctors. They were not giving me any definitive answers. They would say, well you have scoliosis and not everyone has pain from that and yours isn’t that bad. One doctor told me that I was continually straining my back and that I needed to stop doing that. I guess I was supposed to let it heal but having a one year old and only a bike as my transportation I had to do a lot of lifting. That pain and depression cycle lasted for thirteen years! It was a bad way to live life. My poor kid had to go through that. I had no help. My family was mean to me because they didn’t understand it. I started to try and exercise and strengthen my body. It took a full two years to work up to normal exercise movements such as crunches, toe touches, push-ups and walking short distances. These movements caused me pain but I pushed through them anyway. After maybe five years I could lift a laundry basket, bend over a bathroom sink and bend over to put on my shoes, again I was in pain, just able to do a little bit more. I couldn’t cook for long periods of time even though I enjoyed it, the reward for my efforts was pain. I hate pain. My daughter is twenty three years old now. I have been in chronic pain for 22 yrs. straight. It’s painful to sit, it’s painful to move and there’s more about that but I am shifting to get to the point. I was supposed to be wearing a shoe lift but my mother didn’t want the pay for it so I was left for my body to stay all cockeyed and the muscles around the spine tighten in one spot and loosen in others. That means my muscles were reacting to the irregularity of the spin and my spine had been crushing down on nerves. The nerves in the spinal chord that move through the vertebrae streaming out to make a path to get to the other parts of the body. So that was affected too. I am now wearing a shoe lift to help but my legs and hips are going crazy in pain with the shift of movement with new muscles being engaged. My tight hamstrings on the short leg are screaming bloody murder. Last week my sister was checking out my scoliosis because I needed her to tell me which way my curve was going. I was complaining about my arms being uneven when doing exercises but I guessed it was the curve in the scoliosis causing one shoulder to hang down lower than the other. She said, stretch out your arms and let me see. Yes, it looks like one arm is longer than the other so just today I did the measurements and yep it is. So you may want to check your son for other length discrepancies in other parts of the body to see if maybe he might have hemihypertrophy, one side growing more than the other. Or even parts. I hope this helps. Good luck!

      Added:
      Reply
      • Bonnie Lee

        Oh, whoops. I just re-read your posting. He’s probably teething. I just googled at what age it can start. It can start as early as three months. I feel bad for leaving such a long message. I guess I was thinking too much about myself and the problems that I ended up having later from not addressing it properly.

        Added:
        Reply
  7. John Cumming

    Hi Everyone. :-)

    Not sure if my L vs R differences are enough to constitute a disorder, but I’ve been living with them for 65 years without problems, and personally see them as bit of medical curiosity.

    Thought I’d post them for general interest, and maybe to put some minds at rest, as I’m as healthy as horse and have been for years.

    My Left vs Right side differences:

    – Feet: L 1/2 size larger than R. (For my son it is one full size).

    – Weight loss/gain: L always lags/leads R. ie L underarm feels like clothing is bunched underneath when R underarm feels ‘normal’.

    – Some foods (gluten and grain) inflame my knuckle joints: L joints more than R.

    – I’m 6’4″ tall, proportionate build, right handed, myopic.

    Cheers,

    John.

    Added:
    Reply
  8. Georgia-marie

    I have only recently seen a change in my body, my one hand has always been larger than the other by about an inch, after my mother noticed she checked me over and i have now noticed that my right foot is bigger than my left, my right arm and leg also, after doing a bit of research my mother thinks i may have hemihypertrophy, although little is known about it, it occurs mainly in children but as i am nearly 18, should i be worried?

    Added:
    Reply
  9. Danae

    Hi there, when my son was born they nurses thought there was something I did as he had one hand bigger than the other and that hand was bluey/purple in color. No one at the time told me about hemihypotrophy. We had normal xrays taken, mri, all sorts of tests, all they told me was that his arm was actually 2cm bigger in girth (bone) than the other side. When he was about 7 another test was done and his growth discrepency was 5cm bigger than the other side. The dr’s didn’t really have much to say about it. My son went to live with his paternal grandfather for a while then with his father and I lost contact with all that was going on in his life, he returned to me when he was 16 next month he will be 20. What concerns me is the lack of fine motor skills in his right hand. His gross motor skills are great he is extremely strong on his right side. I don’t have a current GP and I really don’t know what to do for him. He dances for my Polynesian group but is now self concious of his movements in his hand as he is not able to perform a task as easy as putting his hand straight out with closed fingers. He is or has developed scoliosis, which I only recently found out one of my other sons suffers from. Anyway, I was wondering what do I do?, My boy is worried that the hospital will off cut his arm because of the growth difference, I believe there is another way. He also has a smaller bladder than most, about his other organs I have not been privy to any other information. I guess I would have jumped on this a lot sooner but he was doing well until just recently when his body started impeding his movements. Does anyone have any suggestions.

    Added:
    Reply
  10. Mary H.

    Just found this info. I am 64, and have only recently (in the last year) noticed a big difference between my left and right side. My left upper arm is 1.5 inches bigger than my right, and my left thigh is over 2 inches bigger than my right. My whole body is lopsided. I have trouble sitting, I can only sleep on my left side (otherwise I feel like I’m suffocating), and clothes don’t fit. I’ve probably been like this my whole life, but never paid much attention to my looks. Since there isn’t a cure yet, we just have to live with it. And you can. Try to be positive, and keep looking for answers. All these years I knew something was “off”, but I didn’t know what. At least now it has a name, and I know I’m not alone. Thanks.

    Added:
    Reply
  11. mamoona

    i will be of 22 years in may 2016.. i have right side slightly larger than left.. like right cheek . and i think .this is by birth… how i reduce this. is there could be a some type of cancer in future???????????? plz suggest me what i have to do????????????//

    Added:
    Reply
  12. Sarah

    Hello all i have a 5 week old baby boy. We have noted that over the last three week his left sidee of head is bigger the his right including ear and eye could this be hemihypertrophy?

    Added:
    Reply
  13. Mary

    Hello I have wondered for a long time if my situation is genetic or what. I have been told that everyone has the discrepancy of one side being larger than the other. I never really noticed it until a few years ago, but still dismissed it because people said it was normal. But I spent a lot of time walking and noticed that when I walk on the sidewalk and it dips for the driveway, I am uncomfortable walking across it. Now, I experience one calf being larger than the other (difficult for boots) and when I buy shoes I find that the left is always a better fit than the right. I considered buying shoe pads to help with them being unequal in size, but the right one is the longer leg and if I buy shoe pads it would still make me uneven. Any suggestions? Thanks.

    Added:
    Reply
    • Josh

      Hi Mary,
      I experience the same. Right side of my body is larger than left. I therefore prefer walking with road or sidewalk curvature that elevates the left side but not the right side. Chronic spinal pain, muscle spasms, body asymmetry never diagnosed but treated with muscle relaxants– clonazepam and tizanidine HCl. Disabling. Searching for further diagnosis.

      Added:
      Reply
  14. Amber

    My daughter is currently 16 months old. Her current leg length discrepancy is about 1/5cm. She also has noticeable difference in one side of her face and one foot/toes is smaller. We have been very blessed because she has ventricular enlargement in her brain and agenisis of her corpous collosum but easily has met all of her milestones. Before she started walking I noticed the girth of her legs was vastly different but now that is not very noticeable. We are just left with an unsteady gait due to her leg difference. Our neurosurgeon ordered and MRI to look at the size of her brain to see if there is a difference and we are awaiting the results. We have seen 2 difference orthopedic docs concerning long term treatment to correct the leg length difference. One suggested leg lengthening and one suggested leg length shortening. Any suggestions on preferred treatment and timing on this? We were just told to get yearly x-rays to track growth for now. For the short term we are using braces that have a lift on the short side to help try to balance here out. I worry about back issues if this is not temporarily corrected. One ortho said he doesn’t recommend the lift as no long term consequences of leg difference and one said it was okay to use. What is your opinion on lifts to help until corrective surgery? Any other screening we need to have? (Per my request our primary doc has done one US of her kidneys looking for tumor- since I read about it online).

    Added:
    Reply
  15. mickey reed

    My daughter kiarah reed has a tumor on the right side of her face they called lnfiltrating lipoma right side face he mi hypertrophy. …..& affects her teeth her tongue her throat her ears her nose……

    Added:
    Reply
  16. Matthew

    Hi all,

    My name is Matthew I am 24 years old, I read some of the pervious comments and I do two have a very slight size different with my right arm and right leg being bigger than my left, I noticed my right calf being bigger around about a year ago, I had MRI and X-rays and they had given me a shoe pad for my left elf which is smaller, would my condition get worse? Can I still have organ issues in my later life? And does anyone get discomfort from overgrown muscles? Please help I need answers.

    Many thanks

    Added:
    Reply
    • Maurice

      My left side of my muscles are smaller and it is very uncomfortable

      Added:
      Reply
  17. Vonda

    Hi Everyone,

    My 21 year old daughter Jem, found this link today and sent it to me. She was amazed that it still exists (so am I) … 17 years on from the day I originally posted my question to Dr Greene. I hope that everyone who has found this article of some help, as I know, even now that information about Hemihypertrophy is not in abundance.

    What I want you all to know is, through all the worrying, doctors appointments, blood tests and ultrasounds. The not knowing up to date information and trying to educate doctors/nurses/family/friends is/was hard, but I am glad that I kept on top of things and fought for the things that should have been automatically put into place for Jem right from the time of diagnosis. Be your child’s specialist and make sure you know as much as you can possibly find out about Hemi. Otherwise you can’t debate with your childs medical care team, what is best for your child.

    Jem had the growth plate removed from her hemi leg too early (despite having regular specialist appointments to plot growth) and it was Jem that brought the problem to my attention. Her Hemi leg had become her short leg because her right leg was continuing to grow at its natural rate. Jem ended up having the growth plate from her non Hemi leg, removed too.

    There was nothing really that Jem wasn’t able to do physically, although there were times she needed to work out a different way of doing things. Fortunately, because of having that second surgery done, Jem’s leg length discrepency is at 1cm and she no longer needs to wear a built up shoe. She still is bothered by the difference in girth of her Hemi leg, but mostly she doesn’t see it as something that gets in her way of living her life to the fullest.

    I know that if your Hemi journey has only just begun, it probably feels like your world has turned upside down. But if you educate your child about this condition that they have, it will be the best thing you can do for them. Don’t let Hemi be an excuse for your child not to try…anything.

    Take Care everyone xox Vonda

    Added:
    Reply
    • Thanks so much for the update. It’s great to hear how Jem is doing!

      Added:
      Reply
    • May

      Dear Vonda,
      I want to thank you for all what you have said in your replays. My Hemi Journey just begun and I’m feeling the exact way what you have described and I will try my best to get through it with my son. and if it possible if you can tell me important appointments you went through to reduce the growth and if there is a chance that the difference will come not noticed in future .
      thank you again and take care

      yours,
      May

      Added:
      Reply
  18. JoAnn

    I think my grandson has this, His right side of his face is larger, he is 7 yrs old, his teeth are not coming in right, very sensitive to noise, right side of his lips are larger than the other side. He also got glasses last spring. I don’t believe he has seen any specialist. My son was told that his one side just is growing faster than the other side of his face and that was it, I am very concerned, he is having trouble in school and I think this would explain some of this difficulty in school too. Any help…….thanks

    Added:
    Reply
    • Sounds like it’s time to bring this up with his doctor again. If he or she has no answers, it would be wise to ask for a referral.

      Added:
      Reply
  19. Puneet

    Hi,

    I am Puneet. i have lost baby boy.its 7 month pre mature delivery.but my baby have abnormal half head and some face’s part also .its slightly like pressed.can you help me out what have been happend.

    Added:
    Reply
  20. Lobo

    Yeah..i think i had Hemihypertrophy (Hemihyperplasia) too..my entire left body from head to toe is slightly bigger n longer..but the face n teeths is the most noticable part..when i was 1 or 2 months baby, i was had vebrile convulsion several time but im not sure how often n how long (simple or complex vebrile convulsion)..is possible the vebrile convulsion cause the hemihypertrophy?

    Added:
    Reply
    • JJ

      My 10yr old son was diagnosed six months ago with hemihypertrophy following a visit to the orthopedic doctor because of a soccer injury. His right leg is 1.9cm longer than his left. His right thigh, knee, calf, ankle also are bigger in girth. He had an ultrasound that showed no tumors and is being treated with heel lifts until it is time to arrest further growth at his femur – this should be around 12yrs old. We are told that this procedure is relatively minor and should allow his left leg to “catch up” to his right leg so that the leg length discrepancy will be close to negligible.

      His condition worries a great deal but I’m careful not to let him know this. Quite the opposite, I have tried finding athletes or role models that have dealt with this kind of disability to encourage him he should not be limited physically (or otherwise). He is a very active child and a good athlete that plays both soccer and basketball at a competitive level. I would like to continue to see him enjoy and compete with other kids but I wonder if his condition puts him at risk for other injuries. Does this group have any opinions on this topic?

      I’m also struggling with hovering over him since the diagnosis to the point that it’s affecting my daily routine – it doesn’t help that he is our only child. My wife does not struggle with this and can’t understand how I feel – after all, his hemi is not very noticeable, has not limited him, and is really out of our control. I feel inadequate for feeling this way but I can’t seem to shake it. It’s made me sad, angry, and more cynical than usual. I have a job that requires a lot of thinking and I have felt a shell of my former self since he was diagnosed. I likely should go talk to a therapist but perhaps I would feel more at ease if I knew what to expect for him in the coming years. I know that the degree of hemihypertrophy varies wildly with people but I don’t have a sense of where his hemi lies with this range (mild, moderate?). What should he expect and how can I help him prepare for the future? Most of the physicians around my area (small to medium metropolitan area with a research university hospital) are not very knowledgeable with hemihypertrophy.

      I feel a bit fortunate not finding out about his diagnosis for 10 years given the little that can be done for it and how it’s affected me in the last 6 months. However, now that I DO know I would like to help him while still enjoying the child that is growing into a young man.

      Added:
      Reply
      • gerard

        Hi JJ it is quite a common reaction to be angered by your discovery, I have a child with hemi and as we go along we are confronted with challenges, recently we discovered that she has sight and hearing weakness on the hemi side. Its important in your mind not to blame yourself for this though it is quite natural to do so, primarily view this as your childs journey and you have been put there to help your child along the way, we are observers and we can help, and you as his dad will help. Go with your strength.

        Added:
        Reply
      • Stephanie

        My son is now nearly 15. He was diagnosed at the age of 5. He had perthes disease in his hip and then they noticed a leg discrepancy of 2cms. After the perthes disease was treated they built up one of his shoes. At 7 he still had a pronounced limb from the surgery he had had. So wasn’t able to participate fully in sports. His consultant doctor had found some report in America that some children. If they no longer had their shoes built up. When they had a growth spurt in their pre adolescent years the leg would even itself out. He said it was up to us what we wanted to do. So I stopped putting the build up on his shoe when he turned 8. His legs have evened out. Now he has less than half a cm difference. As for taking part in sports he is fine. He loves football and rugby. Plays rugby in the school team. He is taking sport as one of his gcse subjects. He no longer limps. And you can’t tell he has hemi hypertrophy or perthes disease. It doesn’t effect him at all in any part of his life.

        Added:
        Reply
        • Stephanie,

          What a fabulous outcome. I am so happy for you and your son. By any chance, can you tell me where your doctor found report?

          Best,
          @MsGreene

          Added:
          Reply
    • DINESH KUMAR

      My friend as is 44 and I noticed that his right part of the body from head to toes are bigger than left part but his chick,nose,teeth, tongue, eye,lips and chin is bigger than left and strong also. How he can cure from this type of disease. Please suggest the specialist and remedies.

      Added:
      Reply
  21. Jane

    Hi I have been looking for answers for my condition.im 52 yrs old and one side of my body is 3mls out from the other side.this means I lean a little,my calf muscles are big one side and not the other.i have full strength left side and weak on my right.i saw a neurosurgeon yesterday and he suggested I have mild cerebral palsy? I don’t think so and dismiss this.my back has scoliosis now.my mother had a very difficult birth of over 15 hours and she passed out so they delivered me by forceps I believe quite roughly for the early 1960s.when I was born I wasn’t meant to live and was placed in a humidifier for some time.my parents took me to many specialists over the years and they all came up with mild Polio? I’m so confused.i have seen other people around my age with a lot more noticeable different sized arms and legs so I’m not alone.i went to the Neuro specialist because two arachnoid cysts were found on my MRI abnormal amount of fluids.he thinks that was also back to when I was born.After birth my parents had the priest give me my last rites as I wasn’t meant to live but I pulled though,despite dr predictions,Mum found out later she has an inverted uterus and subsequently had Caesars with all my siblings with no problems.has anyone had or know anyone who has Been affected like this.much appreciated Jane

    Added:
    Reply
    • Sergio pereira

      My son the same i discovered went he was 3 years Old, now he have 6 years old, all his right side is bigger from head to foot. Is there any cure or hope?

      Added:
      Reply
  22. Meg

    I’ve read many of the replies and can identify with a number of them. I recently found something that has really helped me and I want to share with you! … I’ve actually never heard of hemihyperplasia until about 30 min ago, but I could very well have it. I have a 1/2in leg length discrepancy and scoliosis, discovered as a teen and was tracked by Shriners and an orthopedic surgeon. I was really active so (the docs told me) I didn’t need any procedures. I tried a heel lift but then I just kept twisting my ankle so I took it out and forgot about it. Even when I started getting muscle spasms in my 20s in my back, I didn’t even think it could be related to my leg and back. But they kept getting worse. The last one started about 2 months ago and it was getting progressively worse. For a full week the only posture I could handle was flat on my back. It was a frustrating time. Even more frustrating was when my doctor said that since I had had these flare ups for 10 years, it was now chronic and I had to learn to live with the pain. At 29 years old, I am not okay with this diagnosis so I started research. I found Hana Somatics and it has really helped! I’ve meet with a practitioner/ educator just twice now and he is teaching me ways to work with my structural condition so I can move and walk without pain! The drills are simple and pain-free and work to help me have better control of my muscles through stronger sensory neural connections. The founder of this program, Thomas Hanna, believed that no one should have to just accept their pain and live with it and he worked with many clients and had phenomenal results. He wrote a book, Somatics, which I really recommend. I also recommend finding a practitioner to help you. There are answers and you can have a better quality of life!

    Added:
    Reply
  23. Fred Ensinger

    My name is Fred. I am 43. I was diagnosed as a child, had special shoes as a child and had some corrective surgery during my pubic growth. I have lived normally and have been very athletic over the years. I recently hurt my back and have some concerns that this issue may need to be considered during my treatment. My entire! right side is larger than the left. From a distance, the only way to tell is the calf area of the leg. I am starting to think i need to pay more attention to the issue. My feet are a full shoe size or more difference. I have never really addressed it but now that I have this back issue, I want to be more aggressive. I need a medical professional that understands first of all, and next I need some VA advice on this matter. I am the child of a father that was exposed to agent orange. I’m not digging for liability but if programs exist that can help me with the I matter, I want to find out. Please help. I live in the Austin, Texas area.

    Added:
    Reply
    • Alex

      Hi I’m 15 and I have the same problem. My right leg is thinner than my left. My right foot is also smaller than my left foot. Do you have any tips on what to do before this gets worse? I tried exercising only my left leg to gain muscles but I’m not sure if it will do anything or make the problem worse. Is plastic surgery a good idea?

      Added:
      Reply
  24. Greetings

    I have this condition as a 27 year old man it gets in the way of everyday life. Once you acknowledge that you have this, you will be self conscious about it. I start my day with back pain and have a slight limp. My mother noticed when I was a baby I walked with a slight limp, but never addressed the issue.

    I have no kids, but I’m telling you if you can help your kids to fix the issue now, do it!!!! And the adults with this condition just give it up. lol We have to live with the discrepancy. I gave up on it. My story have a nice life everyone, enjoy.

    Added:
    Reply
  25. Karol

    Hello! Since I was an baby I have been to many specialists with no true diagnosis. My left leg is longer as well as thinner than my right leg. Some of the nerves do not function properly. I tire easily while walking and the pain gets harsh. Now that I’m 28 it’s getting in the way of everyday duties. What could be wrong with me? Any information would help me try to figure out what’s wrong.

    Added:
    Reply
    • Rich

      Hi Karol,

      My daughter now 8 yrs has a longer skinnier left leg (3cm longer). Her right leg is also fatter in the quad, calf, ankle, and larger right foot.

      We did abdominal ultrasounds each year for the first 7. Also discovered a duplex kidney which was explained as a normal variation. We have stopped these now 8.

      We have been told the presentation is not a usual Hemi case as normally one side is bigger and longer instead of mixed. So they say we have some cross hypertophy situation.

      Also when two elbows on the table and fingers pointing to ceiling the left finger tips also are higher, so left arm also longer.

      We are seeing an orthopaedic surgeon periodically who is monitoring via X-ray and will do a bone age scan at 9. Talking about stunting or lengthening leg to equalise in a few years time.

      We have put an orthotic heal lift in 1cm for the shorter leg.

      I noticed your case because it sounded similar.

      Lots ahead of us and praying all goes well. Life could be much worse I feel at this point.

      Rich in Australia

      Added:
      Reply
  26. rina

    Hi,my only son also has right side hemihyperthrophy. His right face,ear,arm,and feet are larger than the other.Doctors at my town don’t know about this disorder. Based on this articles and other preferences, i decided to have a CT Scan, and fortunately there is no something wrong with his internal organs. We are worrying about his future, hope that there will be no discrepancy on his leg since it is in equal size. I am chinese, home country is Indonesia. Please chat me if u all have any information that i should know in order to help my son. Thank you.

    Added:
    Reply
    • Sergio pereira

      My son 6 years old have exactly the same, discovered when he was 3 years old, doctor till now Didn t do nothing nor will, the say cirurgy when he’s older!

      Added:
      Reply
  27. ZULEKA OKINYI

    hi,am Zue n i realised that my left leg is thinner than my right one and the difference has increased over time.am now 20 of age and it can easily be noted that my legs arent of the same size..PLIZ HELP

    Added:
    Reply
  28. Sam

    Hi ! I’m Sam:-) When i was kindergarten i bumped by a motorcycle ofvcourse my parents send me to the hospital and my Doctor find out that i have bone fracture 11 years after that accident I notice that my right leg is getting thinner than the other side even my right arm also is getting and bdcause of that i can’t walk properly and i can’t use my right hand for writing. Dr. I want to ask why is that happening to my body Is that a disease?.

    Added:
    Reply
  29. Lee

    Hi is it normal to be diagnosed with this at age 14? My son has to have an op to stop the growth in one leg. He was diagnosed today and I am worried as all I can find is about baby’s been diagnosed and I am worried he has had this the whole time and I have not noticed it. So far it’s only in this left leg, but they said it’s starting to affect his hip and back.

    Added:
    Reply
  30. shawn

    Hi, my name is Shawn I’m 15 year’s old and I also have HEMIHYPERTROPHY.

    My left part of my body is larger than the other side, including my teeth, eyes, and ears. What am I suppose to do? My parents don’t know about this.

    Added:
    Reply
  31. Marlene

    My son who is now 27 was diagnosed with hemihypertrophy and one his whole right side is 2 sizes larger than the left. Shrines Hospital did amazing work with his leg difference. We made it through all the fears of the cancers and tumors as a child. My concerns now is are there any concerns for cancers or tumors in later life?

    Added:
    Reply
    • Nila

      Hi I am 45 and I was born with hemihypertrophy. They did an amazing procedures on my legs from the age of 6 to 13. There is 1/8 of an inch discrepancy in the length of my legs. I believe that we are no more susceptible to cancer than anyone else. Be sure to get regular check ups & physicals.

      I am finding over the last 10 years I have been dealing with some back pain…I have been told for years that it’s mild scoliosis and I accepted that, however with all the advanced technology I am in the process of seeing a spine specialist in the coming weeks & am very optimistic at getting some relief.

      You really can have a normal life with this condition. The important thing is if your child wants to experience physical activities, be supportive. Do not allow this condition to limit them.

      I would also suggest seeking a child phycologist as we all know, some kids can sometimes be cruel. I struggled as a child. My parents did an amazing job with their persistence with getting help with this condition and did the best they could with the mental part. I am the youngest of 5 children coming along 8 years after the fourth sibling. It was different times. Now with the Internet and all the information out there, a child born with this condition should be able to live a normal healthy life.

      Added:
      Reply
      • Nila

        In addition to the above I would like to add the importance of maintaining a healthy weight based on gender & height. I have fluctuated with my weight at times & notice that when I am at my average weight for my height & gender I feel much better and it seems the discrepancy is not as noticeable.

        Added:
        Reply
        • Sergio pereira

          Please you are the first person to give me hope, my son have 6 years old now like you had when started treatment, i discovered this when he was 3 years old, doctors where i live don’t do nothing nor knows nothing about this, Please point me on what you did and where, i will go everywhere for my son, my only son, please help me.

          Added:
          Reply
  32. Janis Shaw

    My 5 month old grandson has recently been diagonised wtih hemihypertrophy in Indiana. My question is, Do you know any doctors that specialize in this disease? If so, can you suggest any names and their location. Thank you very much!

    Added:
    Reply
    • Chantel

      We are in central indiana and saw Dr. Escobar with St. Vincent for my daughter. He and his staff are great!

      Added:
      Reply
    • Kate

      not sure if you still need it, but we are located in cleveland. we are lucky enough to be by the cleveland clinic. we see dr. timothy moss with genetics and dr. tracy ballock with orthopedics. both specialize specifically with HEMI kids. our son is 2, was diagnosed at 1, and his HEMI is isolated to his right leg. it is significant. the folks here at cleveland clinic have been a life saver! very informative!! very patient and compassionate. hope that helps!

      Added:
      Reply
    • srini reddy

      Janis

      how do we can get diagnosed? is it blood test or do we have get any other tests ?

      Added:
      Reply
  33. Nell Chapman

    My grandson was diagnosed with Hemihpertrophy at about 3 months of age. He is under a doctors care having the necessary treatments listed in your article. He is now 7 months and the most outward sign , since birth is his right leg and right hand is a little larger…not noticeable by anyone except close family members. As a grandparent, l would like to receive your newsletter.

    Prayerfully, more research will follow and these babies will have normal lives in the future. No reply necessary.

    Thank you. Your article gave me a better insight.

    Added:
    Reply
    • Ingrid

      Hello, I am sorry to hear about your grandson. My daughter also has hemihypertrophy of the right leg. I was looking for answers. It is frustrating.

      I hope you are doing well. If you do find a good doctor, please let me know

      Thanks for your time.
      My prayers for you and your family.

      Added:
      Reply
  34. Amit

    Sir my right side leg not full work in 5 year. and all m.r.i riport clear they no show any problam.plz help me i m very apset

    Added:
    Reply
  35. Kodie McPhillips

    Hi I am 22 years of age, I have hemihypertrophy. It’s effected the whole of one side of my body, one side of my body is completely different than the other side. It is double or even more fatter than the other. I been going hospital for years now and they just sent me place to place for me to find out they refuse to do anything about it as there isn’t a lot they can do as its muscles they also said it wouldn’t grow any more.

    They lied in the past 2 years the leg as grow 2 sizes in clothes. I can’t find anything to wear and I feel completely horrible. I’m ashamed of my body. One breast is huge and also one side of my hip.

    I have a rash on the whole of one side of my body and a lump on my back. Please help give me advice what to do. I can not cope any longer its making me depressed. Also causing problems walking now as I’ve been getting pain in my hip.

    Thank you Kodie.

    Added:
    Reply
    • Nik

      Hi, I’m Nik. My problem is the same as others having different sizes of left and right part of my body. In my face and my shoulder I found size, as left part is larger than right1. Please help to come out of this problem. It looks embressing with defect in my body when other people notices it. Please do reply.

      Added:
      Reply
  36. Saba

    My daughter is 2 years old. She was digonosted with brain tumer on left side. After opperation she had fever. Then she lost her halft right side body. Then the doctor opperated again, but the body was not work only little little movement. After that the doctor opperated her for vp shunt, but the body is not working yet. Please help me. I have no idea in nuerology. Please give me advice. I live in Pakistan.

    Added:
    Reply
  37. Haley Traub

    My name is Haley Traub I am 27 years old and have hemihypertrophy. Currently I am having difficulty with my hands very bad hand cramping and tingling, there’s a little going on in my toes and feet but not as bad as my hands. I have been extremely tired I tend to think more tired then usual. In December I was hospitalized with a bad migraine. And occasionally I get blurry vision. My feet and my hands swell if I am on them for more then twenty minutes.
    I am interested in knowing if any of this has to do with hemihypertrophy and if so what can I do?

    Added:
    Reply
  38. todd

    Hi my name is todd hemihertrophy. For years they didn’t know what I had but they thought It was hemihypertrophy, or fedal achole syndrom. But the figured I dont have the fedal acohole syndrom. They figured it diagnosed me with hemihypertroph. Wich its not noticable in my face and body but they say if you look really closely you can notice it but in my legs you can really notice it. Then when I was about 13 we went to a diffrent doctor and immdiatly said go to chopp. Its weired how you say you gotta watch out for cancer. Which is weird because as the doctor and my mom and I talked she figured to asked if it would cause anything else. He said no your body will just grow faster. Which is Funny to me bc not once did he say I would get cancer.not during any of my surgeries not during fallow ups nothing. and yesterday I noticed that on here you say we possibly could get cancer. So I brought it up to him and he said that it was a lie that people who think that are Wrong its not true cancer is cancer you get that a diffrent way. But he said you can when you first born to 7 years of age to get it but after that you dont have to worry

    Added:
    Reply
  39. todd

    Hi my name is todd. When I was in my mom stumic the doctor found that I had something wrong with my body which for years they did test and studied my body to figure out what it was, finally were I was born had a name for it and diagnosed me with hemihypertrophy. Wich we went to a doctor around were I live and told me every little thing I had and told us to go to chopp. We talked to the doctors and told me that if you look really closely to my body you can see my right side is bigger the my left side its more noticable in my legs he said. My mom asked “what is my future looking like and does this cause anything else. He said no this does not cause anything else, but it will cause him to lean all the way to one side and he wish he would of seen me sooner. So if it caauses cancer why did he say it doesnt cause anything else and why wouldnt he have told me

    Added:
    Reply
  40. Heather

    I’m doing some googling because as a child I had hemihyperplasia (I
    still do though now that all the surgeries are over, I’m unaffected). I
    needed a number of facial surgeries and you can still see the
    discrepancy when I smile— you can also see it when I hold my thumbs up
    next to each other. I hadn’t thought about it in years, but over the
    past year my 6 year old’s speech has become more and more nasal and one
    side of his mouth is curving upwards more and more. Two different
    speech therapists think it’s structural and one ENT so far has said
    there is no structural problem and he feels it’s a learned speech
    behavior. We’re about to see another ENT for a second opinion. How
    likely is it that my son also has hyperplasia and that there was genetic
    involvement? If this ends up being the issue, how can we make his
    speech more understandable? As a child, my surgeries all waited until
    my teen years— but if my son follows my pattern and needs surgery, I
    would imagine we’d need to do something sooner rather than later as he’s
    very difficult to understand. Thank you! Heather Price
    heatheramyprice@gmail.com

    Added:
    Reply

Got an idea, tip or a comment?

Your email address will not be published. Required fields are marked *