On… living with Multiple Hereditary Exostoses

I have a condition, it’s called Multiple Hereditary Exostoses. You won’t be able to tell if you’ve just met me… in fact I don’t think many of my friends know. We don’t talk about it much.

I think, I’m blessed to be relatively okay. In severe conditions, some might have stunted growth (okay, maybe I’m stunted…), major deformities, loss of movement, or obstructions to the lungs, urinary tract, GI tract, and sometimes even the brains.

Exostoses are the bumps you draw at the end of each bone, assuming you draw a bone like a normal person would –

Till today (aged 24) (crap, am I already 24?) I haven’t had a bone scan done. It scares me a little not knowing where my exostoses are, my family doesn’t find it necessary. It scares me also, because these tumors have a chance of becoming cancerous, and I have no way of tracking their growth. From “feeling” (and masseuses…), I know I have one on my left wrist and shoulder, one on my right fibula (I think), one on my left tibial (also guessing), and one on my rib which I can’t seem to feel anymore. Some feel like they have shrank.

Limitations in movement? Sitting on my butt hurts after a while, I can’t sit cross legged or kneel down, my legs feel fatigued really quickly. In rare cases where I have to put my body in weird angles, exostoses can cause sharp pains to tendons or result in locked joints… and when that happens, thankfully only once or twice in my life, I have to keep moving around in pain to try to “unlock” them. It might surprise you that I dance so much – I learn to bear with the pain, and avoid positions I know will cause problems.

The only treatments available are surgery, pain management and therapy. My brother chose to go through multiple surgeries because his exostoses were causing him pain and impaired movement. What happens is that they make an incision and saw the extra bits of your bones off. This left him with unsightly scars and permanent nerve damage. Needles scare me and I’ve never even been admitted to a hospital, so surgery’s out of the question for me. My condition’s bearable, so I don’t see a need for surgery either. Mum’s the one we inherited the condition from. Within her family, the men seem to get it worse.

Writing this because I haven’t seen much support for or awareness about MHE in Asia… if you’re someone with this condition looking for answers, feel free to reach me. You’re not alone!

33 thoughts on “On… living with Multiple Hereditary Exostoses

  1. Hi Steph, reading your story I know your pain very well , I’m in Australia and well never known or spoken to anyone with HME im 27 now so the support here is non existent as well by the sounds of things, and yeah I have got so many exostoses ( you probably wouldn’t notice straight away ) any way I gave up counting a fair while ago and had many many surgery’s ( I hate needles too) , the strange part is we have no family members with the condition so I must have one the lottery. Anyway its all good if im still kickn with the amount i have you have nothing to worry about. Take it easy – Kyle

    • Hi Kyle! It’s cool to read about someone else wiht HME! So strange that you have no family members with the condition… how many surgeries did you go through? did your exostoses really impair your movement? great that you’re doing well now 🙂 you have a good one too. if you ever need support i’m here!!

    • Hi There,
      My name is Bernadett, 34 years of age and I have been ” suffering” from MHE pretty much all my life since I was 6 years old. I went through from multiple surgeries, mild disabilities to nasty childhood bulling as a result of my condition but I must admit I am very grateful for this condition. I think it is real blessing. It is not too harsh not be able to function but severe enough to teach you depth of life. I learned a great deal of unique and valuable skills thanks to MHE. Anyways, my point is that I am happy to help or to support anyone to see this condition as you allies rather then enemy.

  2. Hi Steph , Yeah mum went through the family tree found nothing , she has this theory that it had some thing to do with the fluoride in the water where we lived in Melbourne at the time i doubt it. I have had 8 surgery’s some larger than others , I have had several on my ankles with screws in each so I could walk properly, bone taken from the back of my leg so I could kneel in some form and to remove some of the pain, one finger with pin placements to keep straight which didnt work out anyway. And others tried I to get bang for my buck I guess and often got a few done at once. I really should have had more, but left it alone for a while . As for impaired movement yeah I cant run , I like it but can only do in short bursts before the pain kicks into gear. So it limits the sport you can do blah , from what I have read it really varies some people only get a few and others get allot , when did you first notice it ? , What type of dancing do you do?

    • Like I mentioned, mine’s pretty minor! Noticed it at a very early stage – since I could remember, I always had a protruding lump on my wrist which was noticeable. I do hip hop 🙂

  3. Hi, I am 14 and I have had this condition since I was 6.
    I have 3 friends at school who know of my condition, but it isn’t noticeable. I look normal standing next to ordinary people.
    My condition is mild and I always thought that I was ‘special’ and ‘abnormal’. But over the years I have relized that there are people out there with far more problems than me. In fact, I think i have been lucky to come this far with nearly no problems at all. Every year I have to see a bone specialist about my condition and In the past few months I have had 2 operations, right now I am actually recovering from one of them, but they were minor.
    It’s kind of comforting to know that someone else is out there with the same/similar condition as me. I went through life thinking that I was the only one and sometimes it even made me cry. But with my parents helping me all the way through, I feel like I can achieve anything that a normal person could and I haven’t let my condition stop me from doing anything that i Want to.
    I am pleased in a way that I have a condition that is almost unheard of, at least where I am.
    I am a really sporty girl, I used to dance and compete for my primary schools and stuff and now I have been horse riding for years and I intend on letting nothing stop me from achieving the highest scores and the best grades.
    I just want people with multiple hereditary extosis (mhe) to know that they are not alone and not to feel different because they should never give up!

    • Hi Phoebe! This is great! I love how the Internet makes it easier for us to feel more connected. You’re not alone, and I’m sure there are more than a bunch of us, however few, here in existence 🙂 Maybe we should set up a Facebook support group?

  4. Hi, I’m also with this condition. It started to be noticeable at adolescence when lumps started to appear on my wrists, arm, knee and legs. My arm is especially noticeable as the 2 slides of the bones are of unequal length, so it looks quite twisted. Sometimes strangers asks and i tell them i got into an accident……its hard to explain MHE within a few minutes you know and i didn’t want others to look at me in a weird way. I was devastated especially after seeing a specialist who told me that there is no real cure and surgery is the only option with risks involved. I cried all the way home and for a long period of time afterwards. However i learnt to manage with my condition and tried as best to live normally. I think its also my condition that pushed me to work hard and treasure life more…..so for those of you with the same condition, i do urge you to look at the bright side and continue with life….at least i’m alive and more fortunate than those handicapped 😉

    • “at least i’m alive and more fortunate than those handicapped” that’s what i think all the time too 🙂 at least we still can walk and function. stay positive 🙂

  5. Hi Stoofi,

    I am very glad to have found your blog. My son is 17 yo and have HME. He can function pretty normal and seems to be not bothered with it although he can’t squat all the way and if he wears shorts the ones at his knees are quite noticeble. So far he has done surgery once to remove the lump behind his knees. He is a likeable boy but has some learning difficulties and not quite mature for his age.Otherwise he is knowledgeble and bright . And even thought I am not sure what his future is like, I choose to be positive about it and thank God that at least he is much more fortunate than alot of people. God will lead the way! Btw, I think you are awesome and very eloquent! Cheers!


    • Hi Jobina! It’s amazing how one blog post can bring together so many with this rare condition! Great to know that your son is living well. He’s 17, take it easy 🙂 Yes, God has a plan for all of us. It’s great to stay positive and supportive. Thanks for your compliment too!

  6. Hi Steph,
    My parents are strongly against my marriage with my MHE boyfriend. Steph, is it hard to cope MHE? Do you have any MHE uncle?

    • Hi Ling,
      Sorry for the really late reply! I thought I’d replied to this earlier. I understand your parents’ concern – it’s stated there’s a 50% chance that your kids might get it and that’s a big chance. Both my brother and I are affected.
      I can’t say whether it’s easy or hard to cope with MHE because it affects each person in varying degrees. I’m not sure what the factors are. Yes, I do have uncles who have MHE and it seems (in my family) that they are more prominent and thus a little more troublesome when it manifests in males. That said, it could be different in other families.
      Does your boyfriend have problems coping with MHE?
      Hope to hear from you soon,

  7. I’m from England. I have this condition, as well as my brother and sister. My other two brothers didnt get it. It comes from my dad’s side and me and my dad get a lot of joint pain and trapped nerves from our extosis’. My brother doesn’t really get much pain now but he did have a large extosis removed from the back of his leg. The surgeons accidentally cut through his tendon and he cannot pick up his foot, which makes walking a problem!

    I have had two operations so far (I’m 23). One to shave a extosis on my knee when I was 11 ( which grew back!) and another extosis removed on my ankle in Dec 2011. I’m going to my GP this week as I have some on my ribs which get caught and cause sharp pain in chest, making it difficult to breathe. I don’t know what they will do for that though.

    I work as a health care assistant in NHS which means I’m on my feet a lot and I get agonising cramps in my calves after a while and I get very stuff too. I don’t know if this is connected to HME. I also get very tired and on my days off I have a sleep in the afternoon and don’t do late nights if I can avoid it!

    It’s such a joy lol

    • lol!!! i’m deathly afraid of chopping off my exostoses because of all the related risks… and yes i hate being on my feet a lot and i do get stiff calves after AND i don’t know if it’s related to HME either. i am also always tired and i love sleeping…. hahah could this be related to HME?

      • I have never heard anyone else complain of it. Even my own family who have them don’t suffer from pains in calves or tiredness. I go to the specialist hospital anymore because I don’t need regular check ups so I can’t ask there. The doctors where I work know of the condition but do not know if it could be symptoms. So annoying not to know! X

  8. Hi..my Name is Izzati. I’m from Singapore and I’m 20 this year. All this while, I though i’m the only one have to go though all of this. I was diagnose from MHE since i was 8. When i was a kid, i don’t understand all of this..and i still wish i am.. this is because i can’t find someone can relate to my story and the struggle that i have to face in my life. I have done 7 operation so far.. I hope i don’t have to go through the surgery road again. Not that i’m scared.. it just to much.. My suffering continue till today.. Some time i have the intention of giving up…cause no one seem to understand.. Although my family give me all the support that i needed..it just not the same as someone have or had go through that what i have to go through..cause it hard..and i seem to have to do this alone..and what i fear the most is that this can change to cancer without me notice it..and to tell you the truth this condition have stop me from the thing that i love to do..and even preventing me from going to school.

    It take me awhile to realize to find someone or support that i needed. I would like to say thank you for creating this blog..so that people like us have someone to relate too..

    • hi Izzati… I’m from singapore too! I’m 25 this year. You’re not alone, and if you look through the other comments, there are people from all over the world with HME too. how much does it affect your mobility?

      i worry too, that it could turn cancerous without my knowledge. I guess we can only pray for the best!

      • Hi.. Right now i have to use splint and brase to support my movement..and right now i feel like i’m more weak then ever..my whole body is weak and painfull.

  9. hello 🙂 Nice to see how people share ther stories on here nice blog . For kyle we have a facebook group in Australia “MHE 4 Aussies” that i started for just the reasons you mentioned and have quite a few membres now from all over the country, your welcome to visit , as are you all

  10. My mother has multiple exostosis. At 50 things are getting hard for her now especially since shes pretty severe and was meant to be in a wheelchair 20 years ago. But she is also stubborn as hell. Seeing it from an outsiders point of view is insane. I remember having to hand feed my mum as a child when she was stuck prone in bed or having to massage her legs and pretend not to notice her cry (she doesn’t like people to notice her pain). What makes it worse is doctors looking at her like some kind of science experiment or a rare endangered species. I even remember taking my mother to the GP for anti-inflammatories and when we told a new doctor about the exostosis he flat out called us liars and demanded a full body scan.

      • Hello 🙂 well that is the world through my eyes. Can’t believe you are from Singapore (lah!). Have lived / worked there twice near Chinatown and Somerset.. and… well there is a possibility of a third time…we’ll see.

        I loved Cambodia too (your blog is really bubbling), and still have the tee-shirt.

      • I dont know if you received my initial reply Steph probably lost in the world of wifi disconnections), but you are the first HMEer I have ever communicated with. I like your revealing blog. Cambodia? I’ve been there too and have the tee-shirt.. One of my fave places. Lived / worked in Sing twice (and only the day before I met you here a old friend in Singapore was suggesting I give it a third go…). Anyway all the best to you.

      • If you read through the comments, there are tons of us here! Singapore… Well, it gets boring! All the best to you too 🙂

      • Well at least I uncovered a really cool blog as is yours:-) I remember about year 2000 in a hospital there… Gleneagles… and the doctors were pretty perplexed about HME, never heard of it… probably the many terms confusing terms for the bumps perplexes everyone including myself.

        I have been to Cambodia, definitely want to go back there… a country and people of amazing contrasts!

  11. Hi. I’m Ruby. I’m from the U.S., 19 years old right now and also have this condition. I feel your pain, I cannot sit cross-legged, Can barely bend my knees, the exostoses do cause me pain sometimes. I have had two surgeries… One I had done when I was in kindergarten on both of my arms. I had another surgery on my knees when I was in 8th grade. My knees give out sometimes on me, and the last time it gave out on me and locked up, I had to go to the ER, but they didn’t do anything. I had to go out of state to a different hospital. I get asked alot about my scars, and sometimes I feel self-conscious. I don’t like wearing shorts or bathing suits in public because of the exostoses on my left knee because people ask me whats wrong with it, and I don’t like that kind of attention. Feel free to ask me any questions about my experience with this. And I am also afraid of needles as well.

  12. It is so great to see so many people coming together and talking about MHE. I’m 26 and from US, I’ve had MHE since birth with no relation to my parents having it. I’ve found some great websites that have given me a little more info. MHECoalition.org and MHEresearchfoundation.org. I have only had two surgeries to prevent bowing in my arms and one leg. I’m skinny so you can see some of the bones on my legs but other than that I’ve been lucky. Now that I’m 26 going on 27 I’ve noticed my muscles getting sore more often and I’ve been dealing fatigue for years. I also just experienced the “locked up” effect for your legs. It was pretty scary for me actually, I was bending down and thought oh no I need surgery! It’s sometimes frustrating when you go to a Dr office and you have to spell and explain MHE to them! Haha I hear there are great Drs and researchers out there but it seems a lot more research is needed. Good luck and keep researching into MHE.

  13. Hi, I am curious about MHE, there is a possibility that my 10 yr old son has it. He has been referred to a pediatric orthopedic Doctor to get a diagnosis confirmation because his regular Dr. hadn’t ever seen a case. Currently I am confused and worried for my boy. We go to children’s hospital in 2 weeks so in the mean time I have to just try to educate myself. Some of these web sites honestly scare me about this condition. Any information you can give would be greatly appreciated. Also I am a licensed massage therapist, have any of you used massage to help with pain, ROM issue etc? Can I possibly help him or will massage be too uncomfortable?

    • Hello,
      I am Bernadett and I am carrying this condition all my life and I am 35 years old. First all, don`t get scared and do not believe all you read on the internet. The doctors also could get pretty excited, so they may jump to the conclusion to operate him.
      Two things I can recommend to you. First, if he has the bowing on his ankles or knee ask the doctors about the chances that he gets inequalities of limb length. AT that age, he is growing and the bone at the wrong spot can effect his leg length. By the time, I got operated I had 4 cm different both on my legs and arm. I think this is the most important that you are really aware. I cannot emphasize this enough. Many doctors are not aware of this consequences. After having so big difference Chripratic helped me to keep my spine relatively straight.
      The second of my suggestions is that you have to pay enormous attention on his social behavior at school and let the teacher know to avoid bulling. I went through deep hell because of that much more then because of my actual condition. if I knew what I know now.
      All in all, don`t worry this condition can actually give him great skills in life that later he will be grateful for.
      Take care and best of luck. Let me know if you have any questions. I am happy to help
      BY the way, a good massage is always nice. I am not to sure about the pain since I am lucky I never had pain related to this condition but my cousin has. The tumor was pushing the nerves somewhere.

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