Hemihypertrophy & Hemihyperplasia

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.

Question

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

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.

Medical Review on: November 07, 2008
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Dr. Greene is a practicing physician, author, national and international TEDx speaker, and global health advocate. He is a graduate of Princeton University and University of California San Francisco.
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Recent Comments

Is there anything you can tell me how can i fixt this disoder? Is there any medicine that can helps?My whole right side a little bigger than the other side..my eye is bigger my breast is bigger my girth of my right leg is bigger my arm is bigger than left… everything is bigger.. what should i do? I’m really mentally depressed about that. Need a soluation.. please help

I am 46 years old and over the years I have noticed my right side is bigger in ways that my left side my eyes bigger my breast is bigger my girth of my right leg is bigger my arm is bigger and I never really thought there was anything wrong until my friend was a nurse and she said your leg is really much bigger than your left leg and I had a orthopedic doctor about 3 years ago do a bunch of test ultrasounds because he was going to do the Meniscus repair on my right leg he said we need to check for blood clot Because your leg is so much bigger than your left but it came back negative and nothing was ever said of it. Is there a specialist in Georgia that deals with this in an adult or who would you recommend that I go see to be diagnosed?

Hi Amanda,

I’m so sorry you are dealing with this.

We can’t provide a recommendation for an adult physician in Georgia that deals with this, but can recommend you call the nearest teaching hospital and ask there. You will likely need to tell your story several times before you get to someone who knows the answer, but it’s the best route to find what you need.

Here is a list of teaching hospitals in Georgia:

  1. Atlanta Medical Center – Atlanta
  2. Atlanta VA Medical Center – Decatur
  3. Augusta VA Medical Center – Augusta
  4. Children’s Healthcare of Atlanta – Atlanta
  5. Emory University Hospital – Atlanta
  6. Grady Memorial Hospital – Atlanta
  7. MCG Health System, Hospital of the Medical College of Georgia – Augusta
  8. Medical Center of Central Georgia – Macon
  9. Memorial Health University Medical Center – Savannah

I hope that helps.
Best, @MsGreene
Note: I am the co-founder of DrGreene.com, but I am not Dr. Greene and I am not a doctor. Please keep that in mind when reading my comments and replies.

And what’s the medicine for that. My whole right side a little bigger than the other side. It wasn’t like that. It started 2014. Please what’s the medicine for that

Israel,

Thanks for writing in.

Per Dr. Greene, there isn’t a medicine for this. Treatment is with “surgery or with special shoes or lifts. Close contact with a skilled pediatric orthopedist is a must.”

Note: I am the co-founder of DrGreene.com, but I am not Dr. Greene and I am not a doctor. Please keep that in mind when reading my comments and replies.

Hi,
i am 20 years old and i noticed about in 8 years that my hole right side is smaller then left. Morover my jaw, eye, ear, nose, midbrain, forebrain and back of head, of right side are smaller then left. But it is noticable that my right side arm is fit but left arm is smaller then right side even its fingers and muscles are shorter.
My mother said that i was seem from birth. In this condition my weight is fixed on 42 kg. I think some rest and excercise regularly is best for that condition. Some time i feels pain in my right joint of jaw. This disease is so painful for a man, who wanted to lives freely in the world. The life is so terrifying in this condition. May! No ones should suffered from this disease in future

Hi Doctor, I am 15 years old and I have noticed great differences between my left and right side such as my left foot being 1/2 a size to 1 size bigger than my other foot, my left leg is also 1/2 an intro longer than my right as well as the right side of my body ‘maturing’ more, as well as having more hair on the left side of my scalp than the right.
My parents refuse to take my to the doctors to see if this is anything serious, so if you could help me it would be brilliant!

Hlw.. sir
I’m 19 years old…. I have toes of my left leg is larger than my right leg…. There is no problem with this aspect but is it medically unfit ….bcz I want to go in army … I think I don’t have this problem from my birth time …. What is this problem or am I physically fit or not … Plz sir reply me

Hello Docter,
Does the term Overgrowth fits perfectly with the definition of “Hemihypertrophy”
I mean my right side of the body has normal growth but my left side has under growth.
So I just want to ask what can I define my disorder as “Hemihypertrophy” or this is something else?

Hello.Good day doctor. I have daughter a 6month old infant diagnosed during her newborn with congenital problem. She was born with large abdomen with prominent veins on it. At first her surgeon thought it was only mesenteric cyst. During the operation it was found out that the mass is located in her liver and was diagnosed with cavernous hemangioma. Her biopsy result is negative. Now my baby is 6months healthy but my parents notice that her upper extremity is asymmetrical. But still not to this point that you will notice a big difference unless you will check it closely. I’m not sure if it is because of fat. I just come accrosed with hemihyperplasia upon searching about the cause.
Is there a chance that my baby has hemihyperplasia? Or it is just normal,like what you have mentioned that none of us is symmetric. Is there any diagnostic test to find out as soon as possible. I’m just worried…

Dear Dr. Green , I have a condition of this type all of my life I was born in what they call a bubble , with a severe embraceable cord wrapped tightly around my neck .All of my life I have suffered with this disability . I thought I was going insane never telling anyone . I am now 64 . All of my life I have noticed this problem . To start with I was born with a lop ear , deviated symptom ,A lower eye socket my whole left hand side of my body are different .And now as I get older it is getting more severe . I can not even move my legs up and down , like shaking them together . My neck is n know so tense I can barely move it to the right or left . My eyes will not work together , and on and on . Is there any help for me now ? It is like I am two different persons .

Hi Dr.G ,i Have The Same Disoder and its making weaker ,what can i do?thanks

Hello, My daughter is now 18 years old and a ballet dancer at full time ballet school. She has MPHD and has been taking growth hormone and thyroxine since she was eleven. One half of her body is bigger than the other and with a leg length difference of 2 1/2 cm. Her physio thinks her spine might be bigger on one side than the other causing tension. the physio is trying to work out the best way forward- Not sure what we can do as not diagnosed with Hemihypertrophy & Hemihyperplasia. She was tested for Russel Silvers but the result said that she was not. She is determined to be a dancer but we are working round the physical problems. We did consider surgery to correct the leg length difference but the window happened when she was in her exam year and going for auditions for full time ballet school. Just looking for advice. Many thanks

I was born with hemihypertrophy. A difference on my right side of 8cm. I had surgery (a little late, so the difference is still 3cm). Did your daughter have corrective shoes, to help with her spine? I find now, the main problem is in the knees. Constant uneven impact, and more weight on one side, landing harder on one side etc, means my left knee (where the growth plates were removed) is constantly painful. I wish I had been advised to wear compression knee sleeves, but they don’t seem to advise much on this!

Just discovered this web site. I am a 67 year old male who had an observant doctor who noticed one hip was lower than the other when I was 8 years old. I had some Human Growth Hormone shots at that time. When I was 10 I had surgery for a double hernia and to bring a testicle down to where it should have been. Until yesterday, when I discovered this web site, I had no idea that these were related to hemihypertrophy.
My left leg is 1.5 in. shorter than the right. My shoe sizes are 2 sizes different, arms are different lengths, plus I have a lot more body hair on the bigger side.
I have always had lifts in my shoes from 8 years old on. I now have custom orthotics that make up half of the leg length difference. I have been very physically active over my entire life and have run a marathon and many other shorter races. I have lifted weights all my life also. I have had some back isssues but they go away as long as I do my physio exercises plus some stretching exercises.
It is great to find this site as it makes me aware that there are others who have the same issues.

Hi, I am 35 years ild and I have hemihypertrophy. I noticed it when I was 18 years old. My right side of the body is smaller than the left side. I have two kids they are now 15 & 7 and they are normal thanks God. On my leg, my right side is an inch smaller than my right. I mean my whole right side is smaller than the left from head to toes. I hope there will be a discovery one day that could point us what is real cause and enlighten us with this condition. I will always be free if they would ask for survey or diagnostics.

i have totally right side of my body is different from the left side means right hand,body every part of my right side body is different and one thing more right side is not good as compared to left side of my body means not good looking what is this please reply me is that any disadvantages of this to my children in future and what is this please tell me please please i request you please reply me as soon as possible that how this is recovered thanks in advance..

i have totally right side of my body is different from the left side means right hand,body every part of my right side body is different and one thing more right side is not good as compared to left side of my body means not good looking what is this please reply me is that any disadvantages of this to my children in future and what is this please tell me please please i request you please reply me as soon as possible that how this is recovered thanks in advance i am waiting for your earliest reply

I’m 65 years old and was told by a chiropractor only 8 years ago that my right leg is shorter than my left. It seems to affect my whole right side. Thinking back, people commented on this when I was a child, but my parents never noticed. I used to trip on the lines in the sidewalk! I ran much slower on the track when going around the curve because my long leg was on the inside! At age 55 I began having severe lower back pain, every step was agonizing, driving caused pain. I had been prescribed pain killers, they made me feel like a zombie! I was given an insert for my right shoe. I now make my own inserts, just a rubber pad under the heel, below the insole. I began doing gentle lower back exercises from a website done by a British physiotherapist for lower back pain sufferers.
This has made all the difference for me. I am free of pain, (except if I miss exercises for some time, or if I move furniture in the house without shoes on, as when preparing for visitors.) Important lesson from my experience: This condition can begin to cause problems as you age, but you can help yourself with exercise. It is well worth the effort!

would you be so kind as to share a link to the exercises or even the name of the doctor.
thanks

It seems i have hemihyperplasia because i noticed that the right side of my body is smaller that the left side and i thought it was nothing until i found out about this website i noticed it while i was 10 and now im turning 16 and it seems every year my left arm is growing with my body while the right side stays the same should i be alarmed by this.

My grand daughter who will 1 on the 11th of this month, was diagnosed about 6 weeks ago. It affects the right side of her body. Doctors here in Australia don’t seem to know much about it. One doctor says one thing and another says something different. My daughter is so confused, the doctor that told us she as hemihyperplasia said if she gets more of these brown marks that she had 2 at the time of being told, if she got more or got darker to have my grand daughter seen, we did that and nothing was done. Can anyone tell us what they are or direct us in the direction. Thank you.
Concerned Nannie

Hello, Karen. I am a mom in Melbourne whose little daughter with Hemihypertrophy. She is 3 months now. Her left side body is larger than the right now. I am told by PD that we should bring my baby to check up ultrasound and blood test every three months until eight years old. It is a tough and long journey for both my girl and me. But I bless that everything is going to get better and better. Life is never easy to anyone.

I have hemihyperplasia. Other than a c curve with my back and the ever present right shoes is slightly lose and left shoe is slightly tight, I only have one other problem; balance. I do karate and I have some very minor problems balancing on my right foot. I think this is becuase my left side is slightly heavier, dragging my body to the left (I have very little difficulty balancing on my left foot.) Any advice?

Hello there, I just took my 16 month old to the paediatrician for the first time as we were referred by my family doctor. My sons right lower and only the lower leg is about an inch and a half wider around than the other. My pediatrician doesn’t think it is Hemihyperplasia or hemihypertrophy because he says that’s usually the whole half of the body and not just an isolated limb. Is this true or could my son have either of these conditions?

That’s not true. Hemihypertrophy can absolutley be isolated to the lower limbs.

Hello, everyone! I am 17 years old, and I have known about my hemihypertrophy my whole life. Although mine is mild, my spine had a curvature in it, so my parents started the improvement when I was young. Since elementary school, I had lifts in my shoe to even out the discrepancy, but in middle school I got knee surgery (on my longer side) to slow the growth. My other side caught up several years later, so my doctor took out the tools that slowed the growth, and now the curvature in my back is fixed and my legs are even lengths. I still see differences in sizes (my whole left side is slightly larger), but the surgery was quick recovery and never hindered my lifestyle. I am a dancer, and if my parents/doctors didn’t recognize my hemihypertrophy soon enough, I might not have been able to dance after all these years. I just thought I’d share- It’s nothing to worry about; just be aware and nip the problem in the bud if possible. :)

What an inspiring story! My son who is 4 1/2, has had this since birth. He has one leg smaller/skinnier in width, shorter in length, and even his shoe size is about one size in difference. We have seen several Dr.s, even annual visits to Shriners for monitoring. They have all mentioned, both slowing the growth, and possibly lengthening in our future towards end of middle school. As you being someone who has experienced one of these surgeries, what age were you when you had it done, and how bad was the pain/recovery? I never stop worrying and would love some advice by someone first hand who has experienced this!

Reagan,

Thanks so much for sharing your story. It’s very inspirational.

Best,
@MsGreene

My granddaughter (18 months old) has a left leg much larger than her right. there is the same difference when she gets up in the morning and through out the day. We have to use ointment with every diaper change. She stays broke out. My daughter-in-law took her to her Dr. They didn’t seem worried about her leg and treated her for a urinary trac infection. Her bottom got better but never well. The Dr. just refilled her medicine. Could these symptoms be linked to a more serious problem?

Hi, I am 26yrs old.Till now I don’t know what it’s called.Now I knew it is called hemihypertrophy. It’s effected the whole of one side of my body.Right side of my body is completely increased when compared to my left side.it is less than 1inch some times I am suffering with leg pains. I observed those pains are came when I work hard.My parents observed this condition at the age of 2months,both are uneducated persons,they don’t know any thing about this, Is it heridietary disease,it causes any difficulties to participate in sex,after marriage, I am totally confused.please help me sir, I want your suggestions

My daughter is now 16. We didn’t notice it at birth. She actually attending a daycare from infancy and the caretaker called me and asked if we noticed the different in sizes of the left and right. It has been a journey more so for me than her. She deals with it quit well. I am a concerned though because she’s always complaining of her left side aching a lot. We frequent the doctor to be checked out and nothing never comes out of it. I’m scared.

Dear Doctors,

I have been suffering for Sexual problem as I had a habit of over masturbation. Now I’m taking Homeopathy medication. However, In last year, suddenly i noticed that my right side is growing bigger and still the growth continued where left side looks narrow. I have tried to find any possible confirmed clues about the problem. Now, doctor can get any suggestions for the problem i am suffering.

I will more than happy to get your response.

Hey my name is Amit. I am also suffering from hemihypertrophy. I don’t know how it affects me. Left side of my full body is thicker than right. I noticed it first in my high school. I only noticed first that my right arm is than right. Than after some time i saw that right side of my whole body is thinner than left. Than i search for it on Google and found no cure for it. I am nineteen years old and belong to INDIA. Please help me

I have a son who was diagnosed with hemi. as a child, one side of his body is bigger then the other and it hasen’t seem to bother him so much, now that he is 23 his left leg is noticeably larger than the other ( in width) and it is now bothering. Can something be done about this? We are thinking if he can have some fat removed to lessen the size of the leg!!

Hi All , a quick question for all the mums and dads out there.

Your child who has hemihypertrophy were or when were they imusized as a infant? If they were imusized was the size diffrence noticed before or after their shot ? We noticed the change in our wee boy after a shot in his leg just after he was 6 months/ not saying they are related…

but wanted to see if the hemihypertrophy occured after the shot ?

Or parents who did not imusize their child but still had a child diagnosed with hemihypertrophy?

Or parents who noticed the hemihypertrophy before they imuizesd their child?

Thanks any response or feedback here as it would be good as we may see a pattern . may or may not help but good to explore if this could contribute in understanding what we may be dealing with to help build a better knowledge base …

Cheers a worried dad from New Zealand

Hi, my teen daughter we noticed her difference at birth and thought it was just fluid but learned later it was Hemi Hypertrophy. She has also not received any immunisations.

I would love to get in touch with Vonda please we have a 4.5 yr old boy with exactly the same . We are in nz

I would also like to get in touch with Vonda please. I have a 3 month old whose ears and head is larger on the right vs the left. Thank you!

My Greatgrandson is 2 months old and I have noticed that his left side is much smaller, ear ,eye, arms ext. He also will not move his head to the left. Could this be hypertrophy? Who and how is it diagnosed?

Margie,

Thanks for writing in.

Dr. Greene suggest you print this article and take it to your grandson’s primary care physician. He or she will be able to direct you to someone in your geographical location that can help.

I hope that helps.
Best, @MsGreene
Note: I am the co-founder of DrGreene.com, but I am not Dr. Greene and I am not a doctor. Please keep that in mind when reading my comments and replies.

I am 61 and female. My right eye has always drooped and is lower than my left eye. Also about 5 years ago I noticed when the styles of jeans were getting snugger that my right thigh felt larger than my left and I always had to turn my pants around because of it. lol! My hair on my right side is much thinner than my left. Now suddenly my right foot has grown a half size larger which brings me to this sight. I couldn’t possibly have this thing could I? I guess I could mention it to my doctor. I have always been very petite, only 91 pounds. Its never affected my leg length however. Have a good year everyone.

Hi,

I’m a 30 year old female; mom and doctors noted hemihyperplasia at birth, with my entire left side (organs and all, we believe) being smaller than the right, noticeable when pointed out. Just thought I’d share I’ve had no real complications from this apart from some bone/structural discrepancies, because I don’t wear my insoles enough (oops – they only fit in sneakers!) I also had corrective surgery for the leg discrepancy at age 12 which helped a fair amount, have minor scoliosis, and a heart murmur, which I’ve been advised is harmless and expected. I was monitored for abdominal/kidney rumours until age 12 with no cause for concern. I’ve been through a number of medical assessments, and met with geneticists in the past, but it’s been over a decade since I’ve pursued this and will likely be requesting a another referral to a genencist in the near future as there have been a lot of advances in genetic testing over the past decade. I’m not sure if I fit the criteria for Beckett-weidemann syndrome as I don’t meet the other criteria, although we are unsure if I may have experienced hypoglycaemia in infancy as this is something I dealt with throughout childhood and adolescence, and occasionally to this day. Anyway, just thought I’d share a bit about my experience, and hope I may be able to reassure individuals and parents who may be dealing with this at this time that I am a healthy, happy member of society, currently working in he health and helping profession myself! Please feel free to respond and request my email if I can be of any further assistance! Cheers!

This is great Adrien, thank you for sharing.

Adrien–my daughter is 4 years old and was diagnosed with Hemihypertrophy a few years ago when we noticed the leg length discrepancy as well as a wider thigh. What corrective surgery did you have at 12? Was it leg lengthening or shortening?

Dear Adrien,

My niece (5 months) was just diagnosed as hemihyperplasia. What treatment can be done to make sue that she will have a normal life? Her parents are scared to death.

Thanks

Sincerely,
Qinghua

Hi adrien my left part of the body is little bit smaller than right. now am 24 and leading normal healthy life. but since childhood i was not taken care about it. i am scared about my body and my future health. please give me some suggestions.

Hi I been having problems in the left part of my body can you help ?

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.

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.

Hi Yessy my daughter is 22 and diagnosed with hemi from birth…. her foot is much bigger than the other her leg is to…. she has had several operations to reduce the width etc always had to buy 2 pairs of shoes! She suffers now with pain in her foot… been trying for ling time to find a consultant that knows about hemihytrophy…. even if we have to travel….live in UK….

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?

Iam a mother of a handsome boy whose right leg and foot is smaller than the left leg. The right leg is two times smaller than d left leg. He is 18 months now and he was born that way. Though he is walking now but not walking normally.please advise on what can be done.

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.

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.

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.

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.

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.

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.

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!

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.

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?

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.

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.

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????????????//

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?

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.

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.

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).

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……

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

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

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

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

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

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

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.