Living with HME

[@cozzycam97]

I've got on with HME all my life not knowing anyone else who has it. I recently found a facebook page and this video and I no longer feel as alone :D. Also, I am Scottish too! So it is very close to home as well!!!

[@moonbaby2xxx]

cozzycam I felt the same way! My family are from Irish decent!

[@Kaceeschnauzer]

Sorry for replying to a 3yr old comment. But is your Facebook group still active? I haven't found anyone with MHE and I feel kind of alone.

[@katesmith6725]

Joshua Gladwin me and my brother have mhe, and i’m from america, and i go to a famous doctor for my surgery’s, and a lot of mhe peeps go there, so maybe find a doctor that specializes in mhe? that helps me

[@tian5w33t2]

@@katesmith6725 Sorry this a late reply to you, but I'm wondering what doctor in America do you go to? I also have MHE, but I don't know anyone else personally that has it!

[@kimberlyrodriguez2217]

I'm a 17 year old girl and my whole life I've never known anyone else with MHE. It makes me happy to know of other people with MHE and that I'm not alone. I've happy to have lived life as a normal person for the most part (I've had 3 surgeries). I was even able to become a black belt in Taekwondo this year :) However, I could have died very soon from my MHE if I didn't get my last surgery. I had a bone growth in my sternum and it kept growing very close to my heart. It got to the point where I was in pain every second of every day. I had to temporarily quit Taekwondo and any other physical activities. I have a long list of physical and mental problems my MHE has caused me over my lifetime. It causes me pain every day of my life, but it really has opened opportunities in my life to show me how blessed and loved I am by God and the people He's put in my life. The love and support I've received while I was in so much pain is unlike anything I could describe and I'm forever thankful for it. I'm happy I'm able to get the treatment I need, because otherwise I wouldn't be here today. I'm currently recovering from my last surgery and I'm happy I'll eventually be able to live normally again :)

[@Kaceeschnauzer]

This video means a lot. I'm 19 and I just barely got done growing. I've had 22 surgeries in my life time. Most the time I've felt alone because I've never met anyone with MHE, still haven't. But I listen to this video daily because it helps remind me that I'm not the only one. Anyone struggling with MHE just know it does get better. If anyone wants to talk I would love to talk about MHE!

[@Zoe-oo8cy]

I am 17 with my mother and my brother suffering from it too. It really does help to know that even though there are few of us, we can still find people that are like us. My brother had 26 surgeries by the age of 19 and I am currently at 15-16? Honestly, I have kinda lost count. I do agree with the whole feeling alone especially growing up surrounded around 'normal people'. I don't really know where this comment is going but I hope it helps!

[@rajivninave1421]

Guys there is no need for surgery, if you start regular exercises and workout from a very early age. Surgeries are useless and painful. They do not help a lot. But doc can get a huge benefit.

[@sammy94780554]

Yo Joshua, I got it too! So do many people in my family, You are not alone!! Do not view this as a disability, hopefully your doctor did a good job and you do not have to worry. Plus you're almost done growing!

[@Sk8thud]

after reading the comments I feel lucky my hme seems a lot better then others

[@lpsmellowexpress5345]

i have this disease. I am twelve years old and i did 4 operations. I have tumors on my arm with created pain on my right arm and a bunch on my legs with made me struggle on walking properly. Because of thisi have depresion and i still have. I would never wear shorts as i was scared that people would look at me and judge me.i can understand you fully. Even if i have wonderful friends that dont care how i look, inside i still have this feeling inside of me telling that i am not good enough and ugly. But seeing people you have this condition is making me happy and feel better.

[@zsazsa65]

I also have Hme this legit made me so happy and cry . ❤️ thanks for making this .

[@akashninave5001]

Hey there, I am also having hme and I looking forward to know more about people like me. Can you please share me your Facebook id or some contact info

[@tiffanyli2501]

Oh I have H.M.E. looks like I am not alone

[@TheApeSauce]

Me and my whole family suffer from this and I’m glad to see we are not alone.

[@BLADEAN-bm4kl]

Ive lived with hme for 14 years and im about to get my 14th surgery so its really nice to know that im not the only one

[@michelleross5148]

I also have H.M.E but I have not had any surgeries yet. My doctor told me that once my bones stop growing, when I'm 18 or 19 (I'm 16 now) I will have to get an operation on my knees and wrists. I got this disease from my dad and I normally don't get bullied by it but a lot of the time I get ignored by a lot of people. I have few friends that do understand me and they are with me every step of the way. I like how you talked about being tired most of the time. I am always tired. I constantly yawn in school and at home. This video made me feel very special and I hope to one day have people understand what is going on with me. Thanks for showing this video.

[@rajivninave1421]

Please never go for surgery, whatever problem you have over come it by physical theory and regular exercise. Trust life and pain will be gone

[@sauravchauhan4618]

@@rajivninave1421 surgery karna ku nahi sahi han bhai

[@Krankin44]

M.H.E. & I are very close friends... I found it interesting when you talked about being tired. I am always tired. Ive had multiple surgerys but compared to the majority with the condition they have been small ones. It would be interesting to get some info about being tired often. thanks kelly from cali

[@FixersUK]

+Kelly Rankin Thanks for commenting. As a charity that covers every issue we unfortunately cannot advise on M.H.E. However, you can take a look at mheresearchfoundation.org for more information. Best wishes.

[@brittaanderson5354]

I have the same thing and I have NEVER had surgery for it and I am totally fine

[@griffinmillar-kelsey5218]

Fixers UK I'm having a operation to stop my arm from bowing in 2 days because of it

[@tenminutetokyo2643]

Tiredness is driven by chronic high insulin levels. Your body tries to put you to sleep to process all the carbs you just ate. Sort of like "food coma" people get after lunch. Some people have high resting insulin levels even when not eating - when they eat too many carbs the body signals a sugar emergency and puts the person to sleep to stop them from eating more. Until the insulin levels fall. Try cutting ALL carbs and sugar from your diet - and I mean all carbs. Even stuff like potatoes and cereal can be bad. Switch to a paleo diet - mostly live vegetables and tiny amounts of meat, if you must. There has also been a link between chronic high insulin and excessive tissue growth. Also try one meal a day - or restrict your eating times to an 8-hour window only. Eat 8, don't eat 16. Every day. See Butter Bob's vid "Fasting and The 50% Insulin Problem". Also get more exercise. People who exercise have more energy because they're burning up excess blood sugar.

[@MrAuuulia]

Just Saw this video. I am from indonesia and i have mhe too.. i underwent my surgery at 13 years old.. now i feel hurt but when i feel alone i just see this video .. thank you

[@churrchey]

I have H.M.E I’ve had it since the age of 2 years old I’m now 20 years of age, I’ve been diagnosed with fibromyalgia last year I now understand why I’m always in severe pain, It feels really good to know I’m not alone

[@esmemanvia3364]

I had MHE since I was 2 and it's painful

[@harryfield1197]

I'm 15 and I have had HME since I was three. I'm lucky as I've only had one surgery. However I still have trouble walking or standing for too long and with large pain levels. I don't know anyone with HME and want to ask if anyones found ways to manage the pain without medication

[@πολυπαπαγεωργιου]

I'm from Greece and I have mhs..and I have two operation..i'm always tired and I pain..but I can smile..

[@oliviasimone5925]

M.H.E hits very close to home. I am still young but I have had seven surgeries. I am usually upset when people laugh at me for my scars. But they do know why I have them most of the time so it hurts worse! I wish I could just stop it all and remove those bones, but I cant. So for the rest of my life, I will rock my scars and "bumpy bones" until I can't any more :)

[@3000strong]

hi I have the M.H.E too. I feel very alone. Not too many people in America has it so it's like no one cares. I was never able to have surgery. I just had to put up with the pain. growing up kids called me all kinds of names from side show to crippled freak. when I got old enough to be able to afford surgery the doctor told me it's over he can't do nothing for me. I told him that it's not over for me. he smiled and said I like that. I love having M.H.E. this is the best life ever. my bones are rapped with this stuff and they are very strong. so strong that I have never had a broken bone. I've done things that could have and could kill a normal person. I've been in fights where men would almost brake there hands once they hit me and ask for my mercy. I've never felt so powerful.

[@anuragkale8029]

Hey please give me your contact number i wud like to contact you. thankyou [e-mail]

[@FixersUK]

+Johnnie Lewis Thank you for your comment. We hope this film will be useful in helping you educate others about M.H.E

[@andrewrich4046]

Very good film. I have this disorder and know exactly what you mean .

[@mctavium]

This video is very well done and I enjoyed it because I am also affected by this condition. I can’t help but feel that people let this condition define them. You can’t let that happen. I’m not josh with HME. I’m josh, who just so happens to be affected by HME.

[@vanessamagana6486]

I’ve have MHE too and I’m getting my first surgery soon. I’m very nervous.

[@rommot9595]

I've been diagnosed with H.M.E since 7 years and I've had my surgery last month but I'm scared that I have other tumors But how do I know or notice if I have others?

[@ElvenQueen1980]

I have MHE as well, it’s a terrible chronic disease that is hard to live with.

[@tinabtiesrawr]

I have hme too ❤️❤️❤️❤️❤️❤️

[@engyounis346]

Hello , how old are you ?

[@beccaswann6391]

My best friend has MHE and my heart aches for her. She's currently home recovering from hip surgery. I believe this is her 4th or 5th surgery over all.

[@chaitanyapanavkar1120]

I have HME since when I was 5 year old.😇

[@kierstensipos06]

I’ve had HME for almost 15 years now and later this year or next year I have to get surgeries done on both of my knees. I have a sister who also got it but only has like 3 exposes and I have tons of them everywhere.

[@boneman3268]

i got in on the spinal cord too left me in a wheelchair

[@tenminutetokyo2643]

Stop eating all carbs/sugars. It's been proven to reduce it.

[@shivanisingh-iy2dg]

I am also suffering this disease and condition just like you're

[@LotrecM]

I have hme also..

[@tenminutetokyo2643]

Stop all carb/sugar intake. Excessive tissue growth is driven by chronic higher insulin levels.

[@rajivninave1421]

Guys if you have hme please do not have surgery, Without surgery we are far better and naturally fit

[@matthewsmith1571]

This is not true. Get surgery if you can. Just make you’ve weighed up all the consequences before doing so

[@kimberlyrodriguez2217]

I get where you're coming from but it really depends on the individual person's condition. For me I probably would have been dead really soon if I didn't have my recent surgery because of an osteochondroma growing on my sternum.

[@philcrown4964]

I also have H.M.E im 13 had about 9 operations and im on the shorter side but im here to ask if there is anyone here who has expierence with exercising or playing a sport?

[@mctavium]

What kind of sports do you have in mind? I have some experience with track and field as well as some football( idk if your American but I’m talking about American football)

[@rileyproffitt9412]

I am one of the lucky few with the disorder who can play. Most dont play contact sports or intense sports due to the pain. Although it varies from situation to situation.

[@0hThree0h]

Hey Phil, my name is Tim. I'm 28 years old and I've had about 25 surgeries. I have been a sports fan and athlete my whole life. I played soccer, baseball and basketball. My parents always told me that I should try everything and never let anyone tell me that I can't do things. Of course I wasn't able to run or jump as fast/high as other kids, but I've always tried. Sometimes I needed to take breaks in between or rest a day or more afterwards, but I would rather play a day of basketball and barely walk the next two days, than sitting around and don't try, because I love sports. When I couldn't move my ankle and I thought that I am not able to snowboard, my mom put a wedge underneath my snowboard boot and now I was able to snowboard. You can do pretty much everything you want, to an extend. Just try it! Sometimes you have to think of different ways to do things and be creative. I also go to the gym and lift weights. I think movement and activity is very important to stay mobile. Of course I know that there are people who maybe can't to certain sports or even have to use a wheelchair, I can't speak for those. But I am sure that there is a sport or activity for everyone. I hope this helped a little bit. Wish you the best, Tim

[@kimberlyrodriguez2217]

I'm a 17 year old girl and I too have MHE. I'm happy to have lived life without many restrictions for the most part (I've had 3 surgeries). I never did cared for sports growing up but I do love martial arts. I was even able to become a black belt in Taekwondo last year :) Although I'm currently recovering from a major close to heart surgery because of my MHE. It was so extensive that I won't be able to do TKD again for at least 2 years from now.

[@dutchphinix]

@@kimberlyrodriguez2217 so cool. I am doing karate now for a period of time. I really like the sport

[@engyounis346]

I also have H.M.E and I had 11 surgeries , Is there a better treatment than surgery?

[@thacrackpac]

looks like I'm not alone ;(

[@stephenfox7421]

I have h me as well its not nice been in pain all the time and bee short

[@florencealice3831]

Hi I have a very rare condition of hme so far I have had 21 operations and more to come because they are kept on growing I get pick on at school and I feel know one get it even my bf doesn’t he just think like oh like yeah u are in I tiny bit of pain but I am in so much and u am just so scared of further x

[@topa336]

I Have hme I can't sit criss cross and I'm alot shorter gone through 4 surgerys and going to get more for sure and a leg shorter than the other

[@jbourne74]

my doughter have HME,she have 8 years old,

[@Sprix429]

I also have HME

[@brantleyegloff17]

We are

[@avionanderson2127]

I have H. M. E as well 😁

[@rileyproffitt9412]

HME gang

[@traviscollins830]

There is no person on earth with MHE. 100% of all specimens are virtual-biology manifested by the all-powerful frequency computer. It put unauthentic MHE on myself. Cherilyn never had MHE, and Monte had no memory of it ...until 1984, when both were switched out with virtual-biology specimens. Then Cherilyn suddenly had scars and a lifelong memory of it, and Monte suddenly told a story of how he married a female with bone bumps. I grew up, and the computer manifested bone bumps and a bone wing onto myself because it thought it would make for a global storyline to struggle, and overthrow religion, but only after marrying down-the-later making partnerships with other disenchanted genepools. Other wise, scientifically, MHE is easy to explain. I created all white-skin genepools by lack of folate and vitamin D, which are the same things, in different forms. One is monoatoic gold from the sun, the other is monoatomic gold from sun into plants which animals eat, then we eat them. MHE is an extreme version of this, which never happens. Alternating Generations extremely removed from sun, then extremely saturated in sun, over and over. Never ever happens. All fake. But could potentially grow a hereditary bone wing ...for which we have no use because the computer can simply shape-shift wings. Wings are for fun, however do not serve any purpose in the storyline of Earth, which means there is no place for them in the pattern universe. Contrary to rumors (blatant lies) "Annunaki" never had wings. They teleport.

[@leonux978]

Travis Collins wtf?

[@traviscollins830]

I am correct. This video, and this entire condition, and industry, are a complete lie. A powerful computer manifested virtual-biology. Regardless, this video says bone-bumps make one tired. Load-of-crap! Tired means malnourished. Energy synthesis has nothing to do with bones. Lies upon lies upon lies.

[@traviscollins830]

Where do Italians get black-Asian-hair without Asian-eyes? It's all virtual-biology fake. Where does queen Elizabeth get her Asian tsong-dynasty eyes? There is no such migration. It's fake. Virtual-biology. People walking around white with Afrocentric-hair. It's all fake. The only afros are in Brazil, and no 1st-world gene-pool imports them. Carthage/Sicily had slightly-curly hair, however they closed their door to Africa 1,500 years ago. No Africans ever migrated into Phoenicia/Palestine, yet a shocking number of U.K. are walking around as white-people with afros. Absolute foolery. A virtual-biology trick. Ask the computer to "shape-shift" your bone-bumps away. And don't eat meat sold in America, it's completely void of energy ...to make our population stupid, whores, "sheeple". George H Bush is the main British R migration. Reputable British would never breed a Mexico Neanderthal such as Mrs Barbara Bush sr. Never never never. Yet someone (me) switched-on an all-powerful frequency-computer in 1984 which rewrote history, completely unauthentic to confuse everybody. Mind-blowing ill-will

[@leonux978]

Travis Collins You're weird, i like that

[@leonux978]

Travis Collins I have this disease, sadly.

[@andreamastrangelo1122]

i hate mhe.

[@3000strong]

hi I have the M.H.E too. I feel very alone. Not too many people in America has it so it's like no one cares. I was never able to have surgery. I just had to put up with the pain. growing up kids called me all kinds of names from side show to crippled freak. when I got old enough to be able to afford surgery the doctor told me it's over he can't do nothing for me. I told him that it's not over for me. he smiled and said I like that. I love having M.H.E. this is the best life ever. my bones are rapped with this stuff and they are very strong. so strong that I have never had a broken bone. I've done things that could have and could kill a normal person. I've been in fights where men would almost brake there hands once they hit me and ask for my mercy. I've never felt so powerful.

[@3000strong]

hi I have the M.H.E too. I feel very alone. Not too many people in America has it so it's like no one cares. I was never able to have surgery. I just had to put up with the pain. growing up kids called me all kinds of names from side show to crippled freak. when I got old enough to be able to afford surgery the doctor told me it's over he can't do nothing for me. I told him that it's not over for me. he smiled and said I like that. I love having M.H.E. this is the best life ever. my bones are rapped with this stuff and they are very strong. so strong that I have never had a broken bone. I've done things that could have and could kill a normal person. I've been in fights where men would almost brake there hands once they hit me and ask for my mercy. I've never felt so powerful.

[@stephenfox7421]

nice supper hme iv browen my little pinky but never done any thing eale I have hme as well

[@andreamastrangelo1122]

Sti cazzi come si dice in americano?