Multiple Hereditary Exostoses – Meet The Thompson Family


My family is engulfed with Multiple Hereditary Exostoses (MHE).  The disease has affected my grandfather, mother, uncle, cousins, brother, nieces, nephews, daughters and grandson.  It is a way of life for us – like being born Italian or Catholic.

MHE is a genetic bone disorder in which benign, cartilage-capped tumors (Exostoses or Osteochondromas) grow from the growth plate of long bones or from the surface of flat bones throughout the body.  For some patients, Exostoses can cause numerous problems including: compression of peripheral nerves or blood vessels; irritation of tendons and muscles resulting in pain and loss of motion; skeletal deformity; short stature; limb length discrepancy; chronic pain and fatigue; mobility issues; early onset arthritis, and an increased risk of developing Chondrosarcoma.  MHE patients have a 50% chance of passing the disorder on to their children.

For me, I have adapted to become a successful professional woman, mother of two, grandmother, 26 years of sobriety, cancer twice from the cartilage of MHE (Chondrosarcoma) and most of all a very grateful and giving person.  God has placed the right people in my life at the right time.  I have learned to rise one step ahead of my obstacles and to keep on going.

Although MHE has left me with many disabilities, I have experienced many more opportunities.  I continue to suffer, but no suffering has ever been too big to overcome.   My hope is for research to develop a way to block this gene from being passed to our children.  We keep hope that awareness will help fund research and new ways to help reconstruct our limbs to normal functions.

I have happiness, joy and serenity.  Who would want more?

Marlene Thompson
Illinois

 

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Global Genes Comments

  1. Sue Williams says:

    Hi
    My 12yo grandson has constant pain and twitching in his legs after surgery last year.
    I struggle to find a way to help ease this for him and he is very wary of trying some things
    Does anyone have some helpful suggestions in regard to this?
    Anything would be appreciated
    Help!!!!

  2. Jessica Walker says:

    HME has been in my family for several generations. I have the most severe. My family seems to be the opposite of others because it affects only the females. I have 3 kids and only my youngest daughter has been diagnosed with one tumor. I am in severe pain everyday from my shoulders to my toes. I am about to graduate with my associates degree in human services. I am afraid I am not going to be able to work and will have to depend on the government to survive. I do not want to do that, I want to be able to take care of myself and my family, but I might not have a choice. The pain is unbelievable and I am unable to find a surgeon to operate.

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