Multiple Hereditary Osteochondromatosis (MHO)

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  • เผยแพร่เมื่อ 17 ธ.ค. 2024

ความคิดเห็น • 48

  • @sierraclick3535
    @sierraclick3535 10 ปีที่แล้ว +9

    Thanks to everybody who is sharing their story. I was also born with this and have had surgeries on my back, arms, legs, finger and surgeries to correct my leg growth, I've had 13 surgeries since i was 5 and am now 23. If anyone is watching this because their child gas been diagnosed or anything similar its not as bad as others make it out to be. I played sports my whole life and still workout everyday. i remember having pain when i was younger but it passes. The condition has gave me nothing but drive and appreciation and I think as long as you can give you're child the right mind set they will be fine. Even if I could change it I wouldn't because it made me who I am today.

  • @BudgetBugout
    @BudgetBugout 2 ปีที่แล้ว +1

    As someone who also suffers from this condition (I’ve had about a dozen surgeries to remove some of the chondromas), it is hard to hear so many “I can’t”s.
    I know this condition affects each person differently but i was raised with family who makes absolutely zero excuses and have VERY physical lives: my Grandfather runs a mile every single day and up until recently it was 7 miles a day for decades and he spearfishes every weekend in his boat, my Uncle has worked construction for decades, my father worked 20 years as military police often standing for hours at a time.
    I don’t know this young woman’s story but it’s really solidified how examples matter and I’ll ensure my daughter knows that it hasn’t slowed me down either. It’s a condition, not a disability and I’m glad it shaped me into who I am today: someone with grit, humor and drive.

    • @arsheensyeda2278
      @arsheensyeda2278 ปีที่แล้ว

      Thanks for sharing your positive story...God bless you

  • @JohnDoe-eb6ps
    @JohnDoe-eb6ps 11 ปีที่แล้ว +3

    hi im 20 and i also have it and i feel the same way that you do. i find myself being picked on at school. i have loss of motion and pain in my sleep. now know that im stuck with the disease and my family so everyday i get out of the house and yes i get those weird looks but i dont let it get to me and i push myself to sort of prove to other ppl that i can do things that the normal ppl can do and maybe even better than them \when i try. i just \wanted thank u for making the video. God bless u

  • @312dudeman
    @312dudeman 4 ปีที่แล้ว +1

    I feel you're pain, literally. It sucks while you are growing and the chronic pain is awful. I'm 29 now hand have had most of the larger tumors removed with success... hang in there It gets better!

  • @Bluuladi09
    @Bluuladi09 10 ปีที่แล้ว +1

    Three of my five children have HMO. It was passed down to them by their father. My son has it the worse. He has had numerous surgeries and will need more. He is now having severe pain in his right wrist to the point he can not write or move it. Thank you for sharing, didn't know there were so many people out there that suffered from HMO.

  • @ashleyyakymchuk9850
    @ashleyyakymchuk9850 4 ปีที่แล้ว +1

    I have the disease too I have had 10 operations the last one they figured that the bone was cancer but it turned out negative when they removed it, I get a lot of headaches now because of the last operation they did on my chest, I have had more operations on the left side of the scapula and now I fell the pain, doctors have me on heavy medication because the bones crack and have turned red from all the scraping against each other, I was born with the disease at birth

  • @cynthiahernandez9318
    @cynthiahernandez9318 10 ปีที่แล้ว

    Thank you for sharing this and thank you to all who have commented! My baby girl is now 9 and I started to notice her finger grew differently at a very young age.... We took her to several Dr and they never actually gave it a name and they played it off to be unimportant. I have done my own research and came across this and I find that each day she has more and more symptoms in common with you. I'm not sure what the Lord has in store for her in years to come but seeing your story helped me to better understand this rare condition.

  • @meganrosetheasby7388
    @meganrosetheasby7388 2 ปีที่แล้ว

    I love the fact that she has built the courage to post this video I was born with the condition and got a full diagnosis at age 4 since then after having 10 surgeries I am now learning how to drive I don't see this as a disease I see it as a superpower into being the superstar I am ❤❤❤

  • @corinneb9790
    @corinneb9790 9 ปีที่แล้ว

    The biggest challenge is to ward off depression. Yeah, there is a lot we can't do. But a lot we can do too -especially on our good days. Hang in there, you are not alone.
    And have an orthopedic surgeon look at the ones that have localized pain like sour wrist. They can do something to take that pain away. The all over pain you are stuck with until they find a cure or a good treatment for fibromyalgia
    I always think this makes us better, more compassionate people because we know what pain feels like. You are pretty brave to talk about it in TH-cam. I loved your video.

  • @kels_878
    @kels_878 13 ปีที่แล้ว +2

    I have the disease as well, although pain isn't severe but I still feel it. I have multiple " extra bones" in my left ankle, knees, and wrist. Not to mention in my back, shoulders, rib, and collar bone. At times I won't be able to type because of my wrists. I was forced to participate in gym because my teacher didn't believe my pain. It's a serious disease that people should take seriously....

    • @arsheensyeda2278
      @arsheensyeda2278 2 ปีที่แล้ว +1

      Did you ever had surgeries ??

    • @kels_878
      @kels_878 2 ปีที่แล้ว

      @@arsheensyeda2278 yeah a handful or so! We’re starting the process for getting another few growths removed in my left thigh here soon.

    • @arsheensyeda2278
      @arsheensyeda2278 2 ปีที่แล้ว

      @@kels_878 thank you for your prompt reply...even iam patient of m.h.e by almighty 's grace i had 6 surgeries...i was doing work out basic simple excercises..over the period of time they were gone.... touchwood..
      I would recommend excercises rather than surgeries.unless they are painful ...if ur feeling pain opt for surgery...but if u don't have pain... please do physical excercises...they will go on their own..

  • @Kstumberger13
    @Kstumberger13 6 ปีที่แล้ว

    You seem like a very strong person. Hang in there, I wish you and your family all the best! :)

  • @Zoe-oo8cy
    @Zoe-oo8cy 5 ปีที่แล้ว +1

    Okay so I love the fact that such a rare disease is getting some sort of recognition. My mother, brother, and I each have this disease (we have learned that it skips a child since there are four of us children in my family). I am now 17 years old, my mother 56, and my brother is now 35. I know that personally on both my brother and i's end, we've had multiple surgeries. Him, 26 up until the age of 19. I've personally had around 15-16 at this point. Honestly, my brother ended up with scoliosis because of this and now has a rod in his back because of complications with surgery. I have a metal plate in my wrist because of the fact that it had caused me to have knocked knees and the turning of my wrists out. The doctors told my brother that he would never be able to do any job that requires any hands-on activity, and -in his typical fashion- he ignored them and now is an electrician and loves to build fences for other people in our surrounding area. I play the piano. My mother became a nurse. This all being said, it has in no way stopped us from doing anything. We may be research patients (my doctor growing up, wrote the textbooks on MHE and has used all three of us in his studies) but, this disease has not disabled me. If I had the choice to be 'normal' or have this disease, I would choose the latter because this has made me who I am today. Little fun fact, I can now write with both hands because of the amount of surgeries on my right hand. It's quite the fun talent.

    • @Zoe-oo8cy
      @Zoe-oo8cy 5 ปีที่แล้ว

      Also, the very first surgery I had was at the age of three, and it was in my right index finger and was extremely painful to even write anything or even bend it. I've also had a rare case come up where in I had compartment syndrome in my left leg (I am way too lazy to type what that is out so if you want to, look it up),so I mean, moral of my story is that it is great to be an individual and express your individuality.

  • @reginaeiland9358
    @reginaeiland9358 2 ปีที่แล้ว

    My daughter is 24 and has this. Hers still grow, this makes the disorder more dangerous because there is a greater chance for them to become cancerous.

  • @gracebeautyxox
    @gracebeautyxox 12 ปีที่แล้ว +1

    I am 15 and I was born with multiple osteochondromatosis (MHO) and have had surgery since I was 5 but now I refuse it. I'm scared for the future and what's going to happen to me and I hate feeling so different, of course I know there isn't a cure but I'm always encouraged to have surgery which I hate, the surgery itself is hard enough, the pain while I'm in hospital makes me scream but the healing takes so long. I know we could be worse off with another disease but it's not easy to live with.

  • @MrChapel1877
    @MrChapel1877 9 ปีที่แล้ว

    It's amazing knowing that I am not alone in this. I remember being a patient of shriners back in the early 80's and was told how rare of a disease it was. At 37, I have had 10 surgical procedures to remove the tumors, the recent was almost 5 years ago and it appears that I'll be preparing for another on my right leg soon as it is getting more and more difficult to walk. My daughter is starting to come of age and I fear she may have it as well so I figured it was time to brush up on the medical terminology to explain to the orthopedic doctor we will be seeing next week.

  • @arsheensyeda2278
    @arsheensyeda2278 ปีที่แล้ว

    This is absolutely normal ..even i had HME only few surgeries..By Almighty Grace i had healthy life .

  • @goha9218
    @goha9218 2 ปีที่แล้ว

    I was born in this none of my family has it at least the ones I've known however my family are immigrants who grew up in countryside so I don't know if maybe previous generations have it and it slipped generations idk

  • @insurrectionistforfreedom8813
    @insurrectionistforfreedom8813 6 ปีที่แล้ว

    I have this condition and i now need surgery in my wrist it locks up badly feels like a nail is in it

  • @chrissys31
    @chrissys31 13 ปีที่แล้ว

    my son is 16 and has this also and he hates it, he used to be a big sports person and it really bums him out. Maybe friend him on facebook so you guys can talk? His name is Patrick Poole and he has a ton of them everywhere and has had 3 surgeries in past yr. now. He is sick of being almost bound to the house. Healing from a surgery the scarred tissue formed around his tendon in his big toe and locked it up so he needed surgery for that too! Good luck stacey.

  • @angel878958778
    @angel878958778 4 ปีที่แล้ว

    The only treatment for this is your mind, your positive atitude and when needed surgery to remove the extra bones. I never think it will break and I try do move as much as I can each day. And each day I can move more.
    They are some resets...but I start moving again.

  • @corinneb9790
    @corinneb9790 9 ปีที่แล้ว

    In answer to some of the comments. Children can have surgery to treat painful tumors. The tumor has to have cleared the growth plate it has to clear the growth plate or surgery could possibly stop or change the growth of the effected bone. Doctors can tell with X-rays, MRI's, CT Scans if it has cleared the growth plate. . So yes, surgery is a very effective treatment for tumors that hurt, limit motion, etc even in children. This disease tends to be worse on boys than it is girls - not always but boys have a tendency of having more tumors, more aggressive progression of the disease.
    With treatment (removal of tumors that are bothering you) you can live full lives. The conditions that can be part of our syndrome like fibromyalgia and the pain of the tumors can limit us - but it can't stop us unless we let it. Mild to moderate exercise (never push on if you have pain - see your doctor) seems to help but some people have tumors and fibromyalgia so bad that they can't be very active

  • @corinneb9790
    @corinneb9790 9 ปีที่แล้ว +1

    I have MHE and two of my children do. One is completely healthy. I'm 65 and my kids are in late 30's. Listening to your video brought me back to when I was a kid. I had the same limitations you did. They didn't know what it was so I was always in the X-ray table so some doctor could look at them from the angle they wanted. It's caused by a mutated gene we have. I have spontaneous mutation. I assume your dad does too because you didn't say your grandparents had it. Spontaneous mutation of the gene means we were the first in our family line to have. It's hereditary so we passed it on to our kids (sorry!!).
    You talk about the limitations you have. They are very real, don't get me wrong. I have had every one of those symptoms and so do my kids. The pain all over and fatigue is probably caused by fibromyalgia - MHE patients are more prone to getting that. It can be really painful and exhausting.
    See next comment. I ran out of room.

    • @unboxing9155
      @unboxing9155 5 ปีที่แล้ว

      Your tomer groth this time

  • @montseamezcua8797
    @montseamezcua8797 2 ปีที่แล้ว

    Does having this condition qualify for SSI benefits ?

  • @corinneb9790
    @corinneb9790 9 ปีที่แล้ว

    I am not minimizing anyone's pain. Each of us are different. But I still say to focus on what we can do rather than what we can't. I'm not a doctor. My advice is not a replacement to doctor's advice. See an orthopedic surgeon because as it was pointed out - the tumors could be cancerous. It really is rare, but it does happen.

  • @MrYiitov
    @MrYiitov 12 ปีที่แล้ว

    I have that disease. I had 10+ operations because of it. It's really painful sometimes. Operators cleaned my leg lesions, there is one between my radius-ulna, and two of my articulatio humeri. My sister got disease too. I don't think there will be cure to save ourselves. But the best thing we can do is save our children. Controlled-births are the key. I heard they can choose right sperma or ovum that is not have disorder.

  • @chrissys31
    @chrissys31 13 ปีที่แล้ว

    let me ask you, do you get any form of social security for this? I have a son that is 16 and he has had it since he was 12 but just got diag. about 2 yrs. ago. He has had 4 surgeries for them on his legs and arms so far. What do you take for the pain or do to make them better? Can you make some more videos about what you do for all this...please. What do you do for school far as a education and writing? Help me please if you could it is hard to get lots of info with others with it as well.thanks

  • @NemolutionDave
    @NemolutionDave 11 ปีที่แล้ว

    :) im not the only one in this world who has hereditary muliple exotosis/osteochondroma? , just reading the responses from all you guys who had to endure the same perspective view growing up as i have, kinda made me feel overwhelmed with a feeling of ünderstanding", would be good to actually converse with others who also have been blessed with this condition, however! we all have our moments of alienation from the world, but due to this condition,i have grown up to be a genuine individual :)

  • @MrYiitov
    @MrYiitov 12 ปีที่แล้ว

    she can't be operated, cause those lesions will grow until she's 18-20 years old. You have to wait at least she's 5. If it's very painful for her, it should be cleaned. but non-painful ones dont need to be operated until she is 18-20. believe me surgery is not a good thing.

  • @hannahbrileya8300
    @hannahbrileya8300 11 ปีที่แล้ว +1

    I have this, They are painful nd ehhh

  • @Elisabetanjou
    @Elisabetanjou 11 ปีที่แล้ว

    Is this not Multiple Exostoses disease ?

  • @simon.t-c
    @simon.t-c 12 ปีที่แล้ว

    Aka hereditary multiple exostosis. I've had 61 removed. Check me out!

  • @Cherieebaby27
    @Cherieebaby27 11 ปีที่แล้ว

    Hi b i have it too 55 tears old

  • @rjm4031
    @rjm4031 2 ปีที่แล้ว

    I do not wish to cause any offense here, and i pre apologise if i do, as i know this is a sensitive topic. Considering what you (and the people below) go through, how much pain you are in, the loss of quality of life and the high risk of malignancy later on in life, i personally feel that not having children is the right thing to do. Your dad has this condition, and has passed it on to you and your siblings, who are all suffering. I do not feel like it is right to have biological offspring knowing that there is a huge chance they they will also have the condition. Of course i know that for many people, family is their life and their dream, but maybe a surrogate or adoption would be a better way to go about it, that way, you also wont suffer more due to pregnancy changes.
    Again, I'm not trying to upset anyone, just thinking realistically, as someone who has an autoimmune condition and wouldn't want to pass it to further generation. Regards.

  • @rubypage1503
    @rubypage1503 12 ปีที่แล้ว

    I have this too. Hate it.

  • @samanthaharrelson592
    @samanthaharrelson592 12 ปีที่แล้ว

    HI, my name is Samantha and i have MHO also, I found out when I was about 10 years old and had surgery to biopsy them at 16, luckily my growth plates have closed and I no longer have any growth in my tumors, I have noticed that working out and strengthening my knees has lessened the pain I feel, staying active is my choice of treatment. I have however chosen not to have children because of the growth hormone. I am living my life but I do monitor my pain,

    • @leonux978
      @leonux978 7 ปีที่แล้ว

      Samantha Harrelson Thank you for your choice to not have children

  • @NemolutionDave
    @NemolutionDave 11 ปีที่แล้ว

    for anyone who feel they need to talk to someone else from another country, other side of the world who has this aswell, i can relate :) dont hesitat to contact via Fb .com / DaveXX

  • @corinneb9790
    @corinneb9790 9 ปีที่แล้ว

    I wonder if you have seen a doctor about your wrists. Usually they remove tumors that cause localized pain. Especially for kids as young as you.
    I was diagnosed with "osteochondroma" when I was 13. They didn't have a name for our disease yet so they called it osteo which means bone, chond which means cartilage ( the stuff your ears and most of your nose is made of). And Oma which means tumor. My kids were younger when they were diagnosed. In all those years, not one of our tumors has been cancer. It doesn't mean that you won't get it, but your chances are good because your dad and siblings have had cancer. Your strain of this disease is probably not cancer but you need to have them checked if they are still growing after you turn 18 (ours did kneel growing).
    It sucks to have this disease but try concentrating on what you can do instead of what you can't. I can enjoy my job, I was able to have 3 kids and be a single mom, I worked for the government,

  • @Kstumberger13
    @Kstumberger13 6 ปีที่แล้ว

    You seem like a very strong person. Hang in there, I wish you and your family all the best! :)

  • @Kstumberger13
    @Kstumberger13 6 ปีที่แล้ว

    You seem like a very strong person. Hang in there, I wish you and your family all the best! :)