IamA person with a rare genetic disorder that makes my right leg grow disproportionately. Currently, my right leg weighs about 100kgs (220lb) and it continues to grow, AMA!

Why has it not been amputated?

The stump grows even after amputation at much more higher rate, hence not doing it.

How did you find that out?

It was observed in another person in the UK with the similar condition.

I feel like I would want to try to have it amputated anyways. You never know...

The after effects are not so inspiring. My life post amputation will be worse.

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Sorry, I do not understand your view.

That is interesting! What do you like most about your leg?

Even though it looks different, it appears beautiful to my eyes. My leg has been a teacher to me.

That's awesome man

Thanks pal.

I'm inspired by this response, and I like the question by /u/lepraphobia.

Glad you are inspired.

Hail Hydra!

@UnabashedGluttony - What do you mean by "Hail Hydra!"

Cut one down, two will grow!

Need a personal demo from your side! YouTube streams live these days for stupid reasons.

No need to leave a stump, you can do it from the hip joint.

That would not make my life better. Hope you understand.

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This doesn't happen in the case of a person with the normal genes buddy.

Will it ever stop growing? In another 5 years how much bigger will it get?

So far it has not stopped. The growth is gradual but substantiate in a period of time. After 5 years... fingers crossed! I simply live in the Now and trying to make every moment meaningful.

I really hope things work out for you. This just seems unfair.

Thanks for your support.

I am wondering, what the pain level is like day to day? I am hoping you say there is no pain but I realize that's unlikely.

On a scale of 1-10 the pain level varies between 5-9. The pain is mostly in my right leg where the cells collide with each other and the muscles are getting messed up with the surrounding tissues.

Thank you for answering, I am sorry to hear you are in that much pain. I know you like to focus on the here and now as you said in another comment, but I am hoping that your future holds relief!

7 billion people on earth. This campaign should not be a big thing I guess.

At what age did you first begin to notice symptoms of the disorder?

The moment I was born, my parents and doctors noticed the symptoms.

Has the underlying diagnosis been established? The newspaper articles implied it hadn't.

Has the underlying diagnosis been established?

Not yet.

Pardon my ignorance, isn't this just "Proteus Syndrome"...this is what Wikipedia says:

In 2011 researchers determined the cause of Proteus syndrome. In 26 of 29 patients who met strict clinical criteria for the disorder, Lindhurst et al. identified an activating mutation in AKT1 kinase in a mosaic state gene.[10] This mutation in the AKT1 gene was present in all 26 affected patients.

Doctors have ruled out Proteus Syndrome after careful examination.

What else have they ruled out?

95% of the world have ruled me out. I need a vehicle to get to the 5% before the body I live in dies. This is my last life on this planet.

I know it's hard, but try not to lose hope. Myself and other people I know have had medical conditions that baffled doctors, and an answer was eventually found. One of my friends also baffled doctors with a leg that would swell up. It took a while, but they eventually figured it out. Good luck to you.

What did they figure out? Are you and your friends got rid of your "medical conditions" and living a happily ever after life?

That was ruled out (from elsewhere in this thread).

it seems to be a related condition

Based on the symptoms, but not the underlying condition. In an exaggerated case, eating a dozen eggs can cause some of same symptoms as colon cancer, but they have radically different treatments.

That isn't to say you can't learn or apply anything about one from the other, but Proteus Syndrome has very few effective treatment options, which I'm sure have already been tried/ruled out in OP's case.

True that casualsax!

I assume you weigh at least 150 kg or so. Does your body require as much food as someone without this condition (and who's not obese) who weighs that much? That is, do you need to eat much more than an average person without this condition?

That is, do you need to eat much more than an average person without this condition?

I weigh 165 kgs. I don't have to eat much more than an average person but most of what I eat goes to the affected lower limb.

Edit: typo

Have you or do you currently have any romantic relationships? If so, how has your disorder affected things?

About ten years ago, I had a girlfriend. But then it did not last. I could walk then and I did not find it hard. As I said, about 5 years back I led a normal life. But that was the only relationship I was involved in. Work kept me busy after that.

Has this genetic disorder been classified? Do you not get curious enough to actually research this yourself (with hope of finding a cure) or the pain has killed the curiosity?

Has this genetic disorder been classified?

Nope

Do you not get curious enough to actually research this yourself (with hope of finding a cure) or the pain has killed the curiosity?

I need a research team and that would be my next agenda after getting mobile.

I need a research team and that would be my next agenda after getting mobile.

That aside, have you done some research yourself on it? Do you look at this just as a problem waiting to be solved (engineer's perspective) or you have accepted it as it?

Also, if you have done some research, which could be just reading simple biology to understand what is actually happening, in order to understand/find how, could you share some medical details about the disorder?

And what do doctors tell you when you ask them about it? The answer can't be just "we don't know", they must have some sort of hypothesis and maybe a plausible solution to give you hope, right?

could you share some medical details about the disorder?

Yes

Edit : Formatting

Please do.

You can view my medical history here, https://drive.google.com/file/d/0B_m9WCxGvkeAZEdLNjBmdTh4ZTdhOFV3UERlZldMclFwRkhj/view?usp=sharing

What is your 10 year outlook on your leg? Hope for growth to stop, and then what?

Hope for growth to stop, and then what?

Life would be much more easier and I could inspire a lot of people.

At that point could you get it amputated?

Yes if the prosthesis could solve my problem.

Is there a name to this disorder?

Not christened yet!

Your medical records say that it is potentially Proteus Syndrome. Was that ruled out at some point?

Yes

Hi Arun, Your story is facinating at a medical / biological level. I'm sorry to learn that you have dealt with severe chronic pain for a long time.

I read your GoFundMe, written by your brother. (You have an awesome brother btw)

In the comments here, you mentioned that if dr.s amputate your leg, the stump will continue to grow anyway. Your brother does not mention that interesting quirk of your disorder. He says that the Dr.s in Boston did reccommend ampuation and you decidded against it. You absolutely have the right to choose your own path! But in the comments, you said that the Dr.s in Boston could not help you and did not recommend amputation.

Can you clear this up? If it is true that your potential stump would just become a new, wrose problem -- have your brother add that information to the Go Fund Me :) edit to add: Are you referring to Mandy Sellers as the UK person who has a similar condition? Her wikipedia mentions the strange phenomenon of her stump outgrowing her prosthesis

Dr.s in Boston could not help you and did not recommend amputation

The name of the doctor is Dr. James Kasser. I was a 16 year old not so exposed teenager at that time. I was very much mobile at that time that I could play cricket, run, and drive a two wheeler. I was surrounded by 30 Harvard Medical Students taking notes while Dr. Kasser was looking into my condition. In his words, "Arun, the only option we have for your right leg is amputation above or below knee. But you need to decide whether to do it or not as when you wake up in the morning every day, you are not seeing your natural leg anymore." I started crying and I was so much afraid and I said I don't want just cosmetic change and something in me prosthetic will not work out for me. Hence I decided not to cut my leg off.

have your brother add that information to the Go Fund Me

Sure

Are you referring to Mandy Sellers as the UK person who has a similar condition?

Yes, indeed.

Are there any surgical options other than amputation? Or is the growth rate so high you'd need to have surgery to frequently?

is the growth rate so high you'd need to have surgery to frequently?

You are right and could prove fatal as well.

How deeply has this impacted your life? I can't imagine it has been easy, but how has it bled over into your relationships with people, mental health, ability to work, and general outlook on life?

Do you live in fear of this becoming a larger issue?

Have you fully come to terms with it?

Are there advantages to living with this disorder?

How deeply has this impacted your life? I can't imagine it has been easy, but how has it bled over into your relationships with people, mental health, ability to work, and general outlook on life?

Very deep more than anyone can imagine. It has made me who I am to a great extent. Suffering teaches a lot but when the lesson is over I believe healing starts.

Do you live in fear of this becoming a larger issue?

I can't afford to live that way.

Have you fully come to terms with it?

Yes

Are there advantages to living with this disorder?

My answer to this would be a big YES if my life changes the way I see after this IAmA!

Edit : Formatting

Is there any known cure? Is medical science looking for one?

No, there is no cure. And no, medical science will not be looking for a cure as this is a very rare condition which very very few people have. So far I could only find one more person share this disorder. Medical science is busy finding cures to diseases and disorders that affect many people.

A young girl in the town I live in seems to share the same condition. Hope everything works out for you.

This urges the need for setting up a good research team to find a cure.

Do you know why it is just localized to your leg? Does it show any signs of spreading anywhere else?

I don't really know why it is localized to the leg. And no, there are no signs of it spreading elsewhere.

How was it weighed?

It is an approximate figure arrived through logical reasoning.

Do you find that you need to eat more than the average person because of your leg growth?

Nope, but most of what I eat goes to the affected lower limb.

That's a Yes?

Nope

Thanks SamsHair

Is your left leg normal or is it affected too but to a lesser extent?

My left leg is relatively normal compared to the right leg. The feet is affected though and the limb is slightly larger than those of a normal human limb and shorter than the right leg.

Edit : Content

I am wondering, in case you from now on (or from a period in time when the leg was smaller) you live wearing a metal leg-suit of sorts to put pressure on the leg. Would it have grown? I've heard these sort of stuff can shape the body (it was used a lot in old cultures to shape human bodies)

Doctors don't recommend that anymore.

You were probably cynical, but I'll dig anyway since that wasn't much of an answer...

Would it, continue to grow?

To be honest, I dont know and I am cautious not to get my condition worse ... Thanks for your concern. You can get connected to me via fb.

edit: typo

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My zero mobility has affected me too much hence I could not focus on work right now. I can't let my clients down due to my health constraints. Hoping to get my mobility happening and kenriche will soar high in the sky soon. Thank you for your support towards my campaign.

Is there no way they can suck out the fat/tissue to give you some relief? I know you mentioned it continues to grow but slowly. Also after 5 years if growth stops, would using a prosthetic leg be an option? I'd imagine a wheelchair may make things more difficult, but a prosthetic may brighten things up/make them easier. This guy https://www.youtube.com/watch?v=-GIkUYbmrYk lost his leg in the military and lifts regularly. Also i'd just like to say I think it's amazingly brave thing what you're doing, sharing your story, and looking towards the positive. You're an awesome human being and I hope things get tremendously better for you. I donated but I wish I could donate more, and I hope everyone donates.

Is there no way they can suck out the fat/tissue to give you some relief?

Liposuction doesn't work in my case since the fat, tissue are married to each other.

Also after 5 years if growth stops, would using a prosthetic leg be an option?

I will consult a prosthetic expert and then if he gives a green signal, I would go in for amputation. The leg that has carried me for 35 years if it shrinks would be more pleasing to me. But if technology grows and they can my legs just like normal, I would do it.

I'd imagine a wheelchair may make things more difficult

Currently the wheelchair helps me. The modified vehicle is the need of the hour so I can stay positive with mobility.

I donated but I wish I could donate more, and I hope everyone donates.

Thanks. No amount is small to me.

is the leg strong enough to lift itself regularly?

I can't totally lift my leg up. It is difficult. Usually, I need help to walk around. Too much pressure on the leg causes regular toe fracture too and hence mobility is tough without a wheelchair.

Have you considered amputation?

Yes. But the stump continues to grow hence prosthesis wont work.

Wow , just wow . If I were a billionaire I would throw a million at you to fund your business and hopefully better your condition .

Do you plan on moving to the USA one day in search of better treatment ?

Do you have any hobbies besides building your business ?

Do you think dieting would slow down the growth ?

What type of music/artist do you enjoy most ?

I would imagine consuming lots of protein and carbs increase growth. Thank for doing the AMA

If I were a billionaire I would throw a million at you to fund your business and hopefully better your condition.

You are already a billionaire at heart, my friend. Thank you! No amount is small in my eyes.

Do you plan on moving to the USA one day in search of better treatment ?

I have already come to USA on sponsorship, way back in 1997 in my quest for treatment with high hopes. But to my dismay, I was disappointed when the doctors at Boston Children's Hospital told me there was no cure or treatment available for my problem, only option would be amputation which they themselves didn't recommend. Once I am financially sound, I wish to travel to any part of the world if required to find a cure

Do you have any hobbies besides building your business ?

Yes, listening to music, watching movies and I also love adventure which I can only imagine right now.

Do you think dieting would slow down the growth ?

Dieting helps to keep my weight under control up to a certain level.

What type of music/artist do you enjoy most ?

I love to hear Kenny G's soulful music. It's a delight to the ears.

I would imagine consuming lots of protein and carbs increase growth.

I need to be conscious of my eating pattern all the time. But it is not shrinking my leg though.

Are you planning on maybe writing a book about your experiences or letting someone else write a biography?

I am just half way in my life. When I reach a certain point, I would definitely loVe to write few books on various aspects that would inspire all the 7 billion people on Earth. I might need help of professional writers to assist me at that time.

So, since you can't really move a lot, what do you do for entertainment?

This AMA session has allowed me to inspire people and use my time in an efficient way. For entertainment, I watch movies, TV series, and I am on facebook. I play boom beach. I read and I spend time speaking to lot of new people.

so if you were one of the x-men how would you utilize your leg to fight against magnetos forces? like maybe you could use your other leg to do round house kicks to their mutant faces

I am already a gifted person and we are all going to live in Atlantis in loVe using our highest intelligence.

good reply. I hope so too brother

It is the truth. Do you like french fries too much my brother?

Is there prevalent abnormal tissue type growth or is it irrelevant?

It is at the cellular level. Please refer to my medical history link for detailed info.

You stated there was a person in the UK with a "similar condition". Do you know this person? Is there anyone else you know of with an equitable condition?

Yes. I do know the person and we are actually friends for about 5-6 years now. I recently came to know one other small boy aged 5 in the UK who has an equitable condition. My gene has to be tested accurately to know for sure if mine is the exact mutation like the other person I know. I can't afford genetic sequencing & research at the moment.

How has this impacted you river dancing career? I hear that one leg being larger than the other is actually a benefit in competition

I have no clue about what you are talking about @lovebus. I am sorry for my ignorance.

I was just having a joke. Sorry to make light of your situation. It sounds miserable.

Thanks for understanding my situation at least now.

Have you considered contacting the WWE for a career in professional wrestling? Hulk Hogan was famous for his devastating leg drop, but I feel like you could easily top it.

I dont think you feel the pain in me.

Why do so many people work in IT in India?

Maybe because IT pays well and satisfies their material desires.