Hemihypertrophy & Hemihyperplasia

Hi, Dr. Greene, I’m hoping that you can help me find some information on the subject of hemihypertrophy. Like I told you in chat, 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

Hemihypertrophy & 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. 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!

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  2. 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.

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  3. 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.

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  4. 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.

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  5. 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.

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  6. 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

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  7. 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?.

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  8. 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.

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  9. 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.

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  10. 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?

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    • 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.

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      • 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.

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  11. 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!

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    • Chantel

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

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    • 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!

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  12. 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.

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    • 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.

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  13. 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

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  14. 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.

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    • 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.

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  15. 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.

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  16. Heather and Haley,

    Great questions!

    Dr. Greene would love to answer all the question people ask, but he can’t. To try to answer the ones that are most important to the most people, we’ve added a new feature — Ask Dr. Greene!

    If you have a question, just go to http://www.drgreene.com/askdrgreene/ and submit your question.

    Dr. Greene will answer one question a day and he’s going to let our readers decide which question they would most like to see answered. This will be determined by the number of votes each question receives. That means, you have a better chance of getting your question answered if you invite your friends to vote.

    Check it out — http://www.drgreene.com/askdrgreene/ — and let us know what you think.

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  17. 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?

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  18. 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

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  19. 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

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  20. 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

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