Mulitple Hereditary Exostoses

Hereditary Mulitple Osteochondromas (formally Multiple Hereditary Exostoses, or MHE) is a bone disorder of growth; generally hereditary, although not in my case. I have the rare genetic mutation that causes HMO, but, as my doctor said…it has to start somewhere, and it’s started with me.

Having HMO means that I have bone growths that grow on my long bones (legs, arms, etc) and form around joints (shoulders, hips, knees, ankles, wrists, fingers etc). I’ve had eleven (or twelve, it’s hard to remember) fourteen surgeries to remove the bone growths that cause issues. Bone growths need to be removed when they start stretching and damaging nerves and tendons, or when they start fusing the joint. They also get removed when they are too pointy and sharp (since they’re just darn uncomfortable).

My case is considered a more severe case, as I constantly have issues with my bones and joints and nerves. According to one Genetics Counselor I met with, I “don’t have the same characteristics of HMO as the other people with HMO do”.

When I was pregnant, I underwent genetic testing to see what genes my HMO was located on (since I have an odd case). My parents and sisters were also tested, and it was determined that I am the only one in my family with HMO. The point of these tests was so that we would know what genes on any children we had to test to see if they would have the HMO gene.

In October of 2009, N’s genetic result tests game back…and it was determined that he does indeed have the HMO gene. He unfortunately displays a lot of symptoms of HMO. Our second born son, Aj, also inherited my HMO.

N suffers from pain frequently (whenever it’s damp, raining, or too cold, and whenever he over does it). He’s bothered most by the painful bone growths on his right shoulder and both knees, although his wrists will bother him often as well.

Aj doesn’t really seem affected by his HMO just yet. He has a few bone growths on his legs and wrists, but nothing seems to deter him from playing hard and running around nonstop.

Both N and Aj are delayed in their fine and gross motor skills and both of them regularly go to Occupational and Physio Therapy.

Right now, our treatment plan is to keep the boys as active as possible, attend the OT/PT appointments, and take it easy when needed. Surgeries may be in their future, but for now…they aren’t a necessary treatment option.

I’ve blogged before about what it’s like to be a mother with chronic pain; it’s no easy task. I love every minute with my boys, but my body definitely feels it. I gotta say though, if I could…I would take all the bad pain days on behalf of them so that they wouldn’t have to suffer ever.

BumpyBonesblog

If you have HMO or know somebody who does and would like to join a support group, check out MHE and Me – I’ve been a member since I was a kid and I write regularly for the MHE Coalition’s Blog. You can also feel free to email me if you have any questions…I’ll do my best to answer.

16 Comments





  1. Hi Jess, this is Mandy G.’s cousin, Suzanne..I read your blog and really think you are a super person, mom, wife and friend. I just wanted to tell you how much I understand your pain and Mandy’s. I have “RSD/CRPS” or “Reflex Sympathetic Dystrophy/Complex Regional pain Syndrome” and it is “the worst form of chronic pain known to mankind aside from cancer and amputation w/o anesthesia”!! You can find out at http://www.rsdhope.org …I just wanted to tell you that you are a special person and my cousins daughter, Mandy is one of the most special people that I’ve ever met. She leaves me in awe of her! I am not sure she even knows how much I love , adore and admire her courageousness and kindess and fortitude. Anyways…I won’t keep you long..I just wanted to let you know the baby is adorable, and I will pray for him that he doesn’t get the signs of MHE and I will pray for your pain and Mandy’s too…love,Suzanne Stewart…*I have a carepage at: http://www.carepages.com/carepages/suzanneshealthupdate and I have a jewelry website bc when I am able , I try to create/design/sell jewelry and especially “awareness/support” stuff…my jewelry site is at: http://www.freewebs.com/jewelrymkr
    God Bless you and Peace to your wee family!!
    Suzanne Stewart

    Reply

  2. Praying with you that Nolan never displays any symptoms and prayers for you too Mama that you don’t develop any, or at least fewer, too.

    Reply


  3. I just found your blog. I too, have been diagnosed and living with MHE since I was two years old. I am 36 now, and I have always tried to not let my condition get the better of me or dictate how I should live my life. I am glad to see there are others with this as well who are living their lives best they can and documenting the ups and down on this not known so much about disorder. Looking forward to reading all your adventures!
    Take care!
    Kaycee

    Reply
    1. Jess

      Hi Kaycee! Thank you so much, I always love hearing from fellow MHE’ers!

      Reply
  4. Paul

    My girlfriend has MHE. I found your blog while looking for info on the disorder. I have a soft spot for people who have MHE so I wanted to send some positive energy your way. Keep up the good work and I hope you and yours have a great new year.

    Reply

    1. Thank you Paul! That was sweet of you! Send your girlfriend my way if she ever wants to talk to a fellow MHEr 🙂

      Reply

  5. I just read what was up and I think you are amazing. What bravery and courage. I am so sorry this has happened to you but I think maybe there is a purpose to everything. Maybe you may become the voice so many with your condition need to hear. You are in my thoughts and prayers.
    Lisa

    Reply

    1. You have no idea how much this made my day! This is actually my hope and goal. Thank you!

      Reply
  6. Victoria

    Hi Jess,
    Is there any chance I can email you? Regarding Exostosis…..
    I can’t seem to find your email address though.
    Best wishes,
    Victoria (Vicki)

    Reply

  7. So sorry that you’ve had to go through multiple surgeries and endure pain. Hope and pray that your son is spared.

    Reply

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