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

 

26 thoughts on “Multiple Hereditary Exostoses – Meet The Thompson Family”

  1. Susan Wynn says:

    Marlene and her family are an inspiration to those of us in the MHE community. It is wonderful to have Marlene’s story as part of this series, and we hope that anyone interested in learning more about MHE/MO will visit our website for additional info.

  2. Chris Hempel says:

    Marlene — you and your beautiful family are an inspiration and such fighters. Thanks for sharing your story and for raising awareness.

  3. Jane Fitch says:

    Thank you for sharing your story. It helps us all to bond and feel like we are not alone on this journey.

  4. James Perowne says:

    I suffer from an aggressive form of the condition and have had 30+ procedures in the last ten years. The growths have continued past the normal growth span of age. I’m glad you have found strength in your condition. For myself, it has led to unrivaled determination to succeed and make good the investment and time people have put into me.

    I do however struggle with the real choices people make of continuing the trauma of the condition and passing it on to another by having children, without taking the proper precautions made available by modern medicine. I find it wholly selfish and irresponsible to choose to risk the 50% chance, when through isolation of the faulty gene and embryonic screening is available.

  5. Hugh Hempel says:

    Hi James. I appreciate your candidness and want you to know that I find you inspiring in that through all that you have been through, you are still thinking of others. I understand your struggle with making choices to have more children. What I have found to be the most difficult aspect of my life, especially that of a parent with child who suffers from rare disease, is making appropriate choices for myself, my son and my family as a whole. Sometimes, my choices are selfish in nature, and sometimes selfless. There are times that I wish I would have had more strength or better knowledge for which to help me with my choices – but, for the most part – I believe that “the choices we make, are the choices we live with”. Fortunately, my choices have helped me grow as an individual. James, I’m thinking of you and all that you have endured and wish nothing but some relief from what you are suffering. All my best, Heather

  6. I was about 9 years old, maybe younger, when I first noticed the large tender lump protruding from my left shoulder blade like a Rhino horn. I soon became very self-conscious as the bone protrusions multiplied to cover my legs (femur, tibia, and fibula), arms (humerus, radius, and ulna), shoulder blades, hands, feet, ribs, and pelvis, particularly around the shoulder, elbow, wrist, knee, and ankle joints. My height was affected, as was the form of my arms (bow-shaped, my left arm is shorter than my right) and legs (my knees won’t bend all the way), while I had structural damage to my left elbow and hand. I knew I was different to all my other friends, and with such low self-esteem I certainly felt that way. As a consequence I was a quiet child, not going out to ‘find friends’, and, not wanting to intrude on others, would rather wait for others to invite me.

    The surgery started in earnest when I was 13 years old and by the time I was 27 years old 48 of the more irritating lumps had been removed. The leading orthopedic surgeons in Ireland at the time Messrs. Gerry “Gold Fingers” Brady, John Varian, and Jimmy Sheehan all had a go at me, while I was also referred to orthopedic consultants, ENT consultants and neurologists (medical interns in tow) in Liverpool (UK), Seoul (Korea), Singapore, Malaysia, Hong Kong and mainland China.

    In 1990, following an operation to remove a lump from my pelvis, I recall the surgeon’s reassuring words “That’s it, no more operations, the bony lumps wouldn’t grow again“, and that I could now get on with my life. I was 27 years old and I’d gone through more operations, physiotherapy, and recovery periods and overcome more obstacles than anyone should ever have to go through in their entire life. So get on with my life I certainly tried to do, and did.

    However, despite leading as active a life as I could, the ever present pain, which I guess only a with person with HME can truly identify with, continued and in 2008 I was referred to a neurologist at Dublin‘s Beaumount Hospital. He advised surgery on compressed cervical vertabra caused by atypical spinal curvature on the basis that if I didn’t have such surgery sooner rather than later nerve damage and dysfunction would gradually lead to acute lack of sensation on the left side of my body. At around the same time one of China’s leading ENT experts, Professor Pu Xing Kuan (JiangSu Province Hospital, Department of Oto-Rhino-Laryngology -卜行宽, 江苏省人民医院耳鼻咽喉科卜行宽主任医师) postulated a connection between the bony growths and a marked deterioration in my hearing.

    Anyway, onwards and upwards… but I do feel that over the past 18 months Hereditary Multiple Exostoses (HME) has started to become really debilitating… a serious pain in the ****!

    Back in the 70’s 80’s and 90’s the medical establishment really didn’t have a clue what HME was all about. It seems that only in the past decade with scientists such as Dr. Yu Yamiguchi, et al are really starting to get a handle both on this condition and sufferers are living through on a daily basis.

  7. Harrison says:

    I am 21 years old and have been dealing with this for as long as I can remember. In a way I am lucky that many of my growths are miniscule and therefore do not cause pain. But i have large growths all around my knees. Maybe 10 per knee. I have done everything in my power to remain active. I work two physically demanding jobs and suffer the consequences of it at night. I have read that the surgery that is available has led to many cases of decreased mobility and in some cases increased pain. I have two young children and am the sole provider of income and can not afford the risk of not being able to work. Luckily so far neither of my children have signs of this. I deal with the pain which as one knows is incredible. I have found that compression of affected areas can be helpful. Also to know the limits of your condition. Do not overwork your muscles or you will pay for it. Also based solely on opinion I have found strengthening the muscles in the surrounding area to help me. I spent alot of time building my leg muscles and for a while felt a significant if not sometimes complete decrease in pain. Unfortunately my job as a restaurant manager is incredibly physically demanding and there is no time to sit so my pain recently has been some of the worst yet. I truely hope that there is a cure for this disease within my lifetime that does more than hack off some bones and hope they dont come back. I am so grateful there are other people fighting to find a cure as well becaude as many of you know this disease feels like a one man battle.

  8. Roberta says:

    I also have MHE, although when I was a child there wasn’t even a name for the condition. I find it interesting that the last name of the family featured in this article is Thompson. My mother’s father’s last name was Thompson. I wonder if somehow we could be related.

  9. tanvir says:

    i am so upset that last night doctor has detected that my 2 years 8 months son is undergoing MHE. in fact we visited doctor to check up his swelling hill and bowing.i can’t trace any hereditary inclination of my or my wife’s family..please help regarding precaitions and how we can stop bowing.

  10. Raqual Johnson says:

    I had the (MHE) bone disease since I was 4 years old when my doctor notice the lumps on me. Now I’m 28 My mother say I had got it from my father and his side of the family and all of my half brothers and sister had it as well on his side. Now both of my sons have it and my 4 almost 5 year old son is disable from it today and have to get many of surgery always in the hospital and at the doctor’s
    office. I’m sorry that my father had it and I wish I didn’t have it because it keeps you from living a normal life and I had to learn the hard way it’s very sad that your own child that you love and care about can get it from you these thing grows real fast and real big become very painful if you wait to long before you get surgery while it’s real big it can cause you to not walk damage the nurves. Everything you heard about this condition is true please don’t ignore the size and pain of these bone tumors or you will become disable too.

  11. Raqual Johnson says:

    That’s when I first found out that my boys had it when they both was 2 years old but I know that they got it from me. What shock me I didn’t even know it shows up that early on a small child that age.

  12. Raqual Johnson says:

    They can grow any where I have them all over they can grow on your head skull, your ribs, your pelvic bone, ankle, knees, legs, arms, under arms, back, shoulders, risk, and hands and fingers. The ones that was around my knees and in my arm and under my arms was the most biggest ones they grew the size of tennis ball the one my son had grew the size of a goid size base ball and attack his nurves in his leg. Some of them be hiding inside of you at a smaller size but x-rays show them all.

  13. Kat Spurgeon says:

    My son was diagnosed with this at 1 1/2 years old. He is now 3 but we are just now starting too learn about it. His doctor barely knew anything. Is there any advice you could give me too help my son? No one in our family has this and it’s all new.

  14. Mark Anderson says:

    https://www.facebook.com/groups/1492777671024556/

    If any one wants to link up on FB to our Group please do – Rgds Mark Anderson

  15. Disember says:

    Hello I have had MHE since I was a little child. It has effected me to the point where I do not want to go out. I always feel as if someone is staring at me. It has put me in a point of clinically depression. I fear that my children will get it but so far they have nothing. Is it just the men that pass it?

  16. Shelby king says:

    I have had MHE from being around 3 (iam now 17)i have these lumps on my finger, wrist, foot (near toes) ankle, both knees (which i now have 8- plates for), the whole of my right leg is mostly covered in these and since having my surgerys one seems to have grown back, i feel deeply deeply sorry for you and your family

  17. Victoria says:

    I am about to turn 40 and had my first surgery when I was five. Twelve more followed over the next several decades. Despite the pain, nerve damage, physical limitations, scars, and funky looking digits:-) I am a happy healthy productive member of society. I have a great education, wonderful job, have served in the Peace Corps, and have traveled the world despite having MHE. Yes it makes things a bit more difficult but I make sure I take care of myself, get proper exercise and eat well. I really think strong muscles and maintaining a proper weight can really help. I do know how horrible this can be… I lost my father when I was 8 years old to this disease (he was one of the 1% when it turns cancerous) but I am super happy that my parents still decided to have me and I am getting to make the most of my life even with MHE and this is the mindset I will bring as my husband and I try to get pregnant.

  18. Sam Hanrahan says:

    I have had this condition since I was about 2 years old. My operations started when I was 3 years old. I had 9 operations up till the age of 16. Then they told me the lumps will stop growing. So I opted out of having anymore operations up until recently when some of the lumps started affecting my lifestyle.. I went to the orthopedic hospital In Birmingham for the doctors to have a look at my fingers as one had a cystic lump on it which was due to a EXTOESE on the joint causing the lump.. then another finger which I had operated on do to a trigger finger effect which they didn’t realise was being caused by a small sharp lump which was rubbing on my finger tendon threatening to snap my tendon. And I have a third finger which is bent outwards due to an extoese in my joint. I have realised I have alot of other lumps on my skeleton which the doctors haven’t looked at yet.. which can potentially cause me more problems. It feels like I’m a kid again going though these operations and worrying about the impact this is having and will have on my life. I’m 34 and leading a active life despite these problems

  19. Laurie G says:

    I first found out I had MHE when I was 6 and I was riding in a wheel barrow with my knees bent and when I tried to get out I felt a sharp pain and my leg wouldn’t straighten properly. But after a couple of minutes it finally eased enough so I could walk again. I had surgery on my knee after that. It runs on my mothers side and the only ones I know of that have them are one cousin out of 22 cousins he hasn’t had any surgeries yet, my brother who is 37 had one leg surgery at 10, myself, my nephew who is 8 had one surgery when he was 5,had one growing in his chest and all the boys have one growing in their pointer finger, and my mom had one that grew on her leg when she was 42, she had it removed. My biggest ones are in my legs and my arms. I’m now 39 years old and I am having my second surgery on both legs to remove two lumps, one the size of a strawberry the other the size of a kiwi. As I am older I find myself limping after work. And they seem to bother me more regularly. Before I would just hold my leg bent till it felt better and went on with my day. I will be having surgery after on my upper arms as I feel it is one of the causes of my poor circulation in my hands at night.

  20. Iranna says:

    My son was diagnosed with this at 1 1/2 years old. He is now 2 but we are just now starting too learn about it. Is there any advice you could give me too help my son?

  21. Iranna says:

    Your comment is awaiting moderation.

    My son was diagnosed with this at 1 1/2 years old. He is now 2 but we are just now starting too learn about it. Is there any advice you could give me too help my son?

  22. James O'Connor says:

    My family is the same! I am an O’Connor, from Victoria, Australia, I have lots and lots of osteochondroma and lots of surgeries too, my dad has a few but none too bad. We have relatives called the Moloney’s who have it and I believe we all get it from ancestors the Clancy’s. One big Irish/Australian mess of bones. I just had my last surgery a fortnight ago on my left tibia and 12 months ago surgery on my right tibia! First one removed from my spine at age 5, then multiple from legs and wrist, have the classic deformed left forearm too.

  23. I see you have been trying to talk about your issues here baby i am glad that you have some people to relate too about your trials i was just here looking for a doctor for you and the kids hoping someone here had some suggestions.

  24. Cailin Maldonado says:

    I was diagnosed when 8 months old. My grandmother was holding when she felt a large lump on my back. I am currently 20 years old now and have 47 tumors. So far I have only had 2 surgeries on my left leg. I had the first one when I was in 4th grade and the second one when I was 18. Now unfortunately the tumors keep growing and I am in constant pain everyday. There are times where i rather have charlie horse than to take this pain. I had to stop working, and driving. I eat well and do my stretches everyday. But 3 weeks ago I started to get another pain on my leg shoulder, I feel my arms getting weaker, my legs in more pain than usual. Everyday I ask myself who would want to live like this?

  25. 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.

  26. 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!!!!

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