Kallmann Syndrome

[Mechaghostman2]

So I have a rare disorder called Kallmann Syndrome. It's a fucked up disorder where I have a malfunctioning pituitary gland, along with other shit. Does anyone else on here have this disorder? Or anyone else with any other kind of disorder they'd like to share?

https://www.youtube.com/watch?v=-VybMKMjKec

[brewer]

Have you tried transdermal treatment instead of injections?

[Edwardo Piet]

I've not heard of that disorder. Sorry to hear that you have it. It sounds rough.

Or anyone else with any other kind of disorder they'd like to share?

I have Autism Spectrum Disorder, but that's it.

I'm sorry that you go through what you go through, things must be hard for you.

[KevinM1]

I have Arthrogryposis Multiplex Congenita (https://en.wikipedia.org/wiki/Arthrogryposis). I've had 43 surgical procedures, most of them osteotomies (https://en.wikipedia.org/wiki/Osteotomy - they're fucking painful to go through), to give me what function I currently have. I had another 2 surgeries for an unrelated kidney stone issue. I cannot walk (must use an electric wheelchair), and need help with activities of daily living, including but not limited to: bathing, other hygiene, cooking, bathroom use, dressing myself, etc. Due to the way I sit (my hips won't allow me to sit at a straight 90 degrees), I also have pressure sores on my ass, which always give me pain and have become infected before. Not fun.

I'm also a diabetic. My form of it is essentially late onset Type I. There's a family history on my mom's side with it. When someone gets into their 30s, they usually get it, regardless of diet or physical activity. I'm currently controlling it with oral medications and diet.

[brewer]

I have Arthrogryposis Multiplex Congenita (https://en.wikipedia.org/wiki/Arthrogryposis).  I've had 43 surgical procedures, most of them osteotomies (https://en.wikipedia.org/wiki/Osteotomy - they're fucking painful to go through), to give me what function I currently have.  I had another 2 surgeries for an unrelated kidney stone issue.  I cannot walk (must use an electric wheelchair), and need help with activities of daily living, including but not limited to: bathing, other hygiene, cooking, bathroom use, dressing myself, etc.  Due to the way I sit (my hips won't allow me to sit at a straight 90 degrees), I also have pressure sores on my ass, which always give me pain and have become infected before.  Not fun.

I'm also a diabetic.  My form of it is essentially late onset Type I.  There's a family history on my mom's side with it.  When someone gets into their 30s, they usually get it, regardless of diet or physical activity.  I'm currently controlling it with oral medications and diet.

See bold

Use to see this all the time in the nursing homes. What's your treatment/prophylaxis regimen?

[KevinM1]

I have Arthrogryposis Multiplex Congenita (https://en.wikipedia.org/wiki/Arthrogryposis).  I've had 43 surgical procedures, most of them osteotomies (https://en.wikipedia.org/wiki/Osteotomy - they're fucking painful to go through), to give me what function I currently have.  I had another 2 surgeries for an unrelated kidney stone issue.  I cannot walk (must use an electric wheelchair), and need help with activities of daily living, including but not limited to: bathing, other hygiene, cooking, bathroom use, dressing myself, etc.  Due to the way I sit (my hips won't allow me to sit at a straight 90 degrees), I also have pressure sores on my ass, which always give me pain and have become infected before.  Not fun.

I'm also a diabetic.  My form of it is essentially late onset Type I.  There's a family history on my mom's side with it.  When someone gets into their 30s, they usually get it, regardless of diet or physical activity.  I'm currently controlling it with oral medications and diet.

See bold

Use to see this all the time in the nursing homes. What's your treatment/prophylaxis regimen?

A combination of simply getting off my butt (my wheelchair can tilt back), topical ointments of varying kinds, and protective coverings. Prisma/Promogran when things start breaking down.

When it was really bad, I had to visit the local wound care clinic, but I have a pretty decent system of dealing with them now. Still hurts, though.

[Catholic_Lady]

Mecha, Hammy, Kevin, you are all very appreciated for being open about your health issues here and sharing your stories.

[Aegon]

I had FSGS (collapsing variant) `which caused my kidneys to fail, but thankfully it has not reoccurred since I got a transplant.

I also have tarsal coalition which has caused me serious pain any time I'm on my feet since I was around 12 or 13, but I've adjusted to it and only when I am on my feet for hours will it become debilitating. I have orthodics but to be honest they don't help a whole lot.

[Edwardo Piet]

Mecha, Hammy, Kevin, you are all very appreciated for being open about your health issues here and sharing your stories.

Thank you.

Ironically, with me, I think the way my autism affects me actually leads partially to my saying everything on my mind including sharing personal stuff. I've never understood what's wrong with sharing personal stuff with people. They're often more bothered by it than I am. Glad you appreciate it though!

I can keep things to myself, but it drives my mind bonkers with all the things I want to get out there... and whilst I always used to be miserable (or at least intensely frustrated): I've been profoundly happier since I stopped keeping things in.

Boru

Oh wait, I'm not Boru. Whoops.

Hammy

[Astreja]

I've been diagnosed with fibromyalgia (currently under moderately good control and not giving me too much trouble), and also have something weird going on my legs -- lymphedema, lipedema, or possibly a combination of the two. Carrying extra fluid weight in my legs has increased the strain on the knee and ankle joints, so I try not to go anywhere without my trusty support hose and shoe orthotics.