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I have a rare genetic condition AMA

Hi guys,

I've got a rare skeletal condition called conradi-hünndrman-happle syndrome

Not even a lot of doctors know about it but you can ask me about it.

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Reply 1

Ciel.

Original post by EuropeanAcamedic

Hi guys,

I've got a rare skeletal condition called conradi-hünndrman-happle syndrome

Not even a lot of doctors know about it but you can ask me about it.

NVM

(edited 6 years ago)

Reply 2

EuropeanAcamedic

Original post by EuropeanAcamedic

Hi guys,

I've got a rare skeletal condition called conradi-hünndrman-happle syndrome

Not even a lot of doctors know about it but you can ask me about it.

Hünnerman* thanks autocorrect

Reply 3

Notnek

Original post by Ciel.

Stop making **** up. :h:

Twas a typo:

https://en.wikipedia.org/wiki/Conradi%E2%80%93H%C3%BCnermann_syndrome

Reply 4

Ciel.

Original post by EuropeanAcamedic

Hünnerman* thanks autocorrect

Oh, that's why googling it didn't work : O I thought you were a troll.

Reply 5

Ciel.

Original post by Notnek

Twas a typo:

https://en.wikipedia.org/wiki/Conradi%E2%80%93H%C3%BCnermann_syndrome

Yeah, I know. Sorry OP. : O

Reply 6

Notnek

Original post by Ciel.

Yeah, I know. Sorry OP. : O

I also thought it was a troll thread initially :smile:

Reply 7

EuropeanAcamedic

Original post by Ciel.

Yeah, I know. Sorry OP. : O

It's alright, it sounds really odd tbh 😂

Reply 8

Notnek

Original post by EuropeanAcamedic

Hi guys,

I've got a rare skeletal condition called conradi-hünndrman-happle syndrome

Not even a lot of doctors know about it but you can ask me about it.

What are your symptoms?

Reply 9

Ciel.

Original post by Notnek

I also thought it was a troll thread initially :smile:

Meh there are too many trolls on TSR, we are paranoid now.

So, OP, what exactly is your condition?

Reply 10

EuropeanAcamedic

Original post by Notnek

What are your symptoms?

I've got..
- bald spots
- scaly skin
- creme du lait skin so swirly skin with lighter tones (not sure if it's the right word)
- kyphoscoliosis - hence the wheelchair and because of that I have breathing problems and spinal cord tethering
- short stature
- hearing loss
- mild cataracts that isn't noticeable

Reply 11

EuropeanAcamedic

Original post by Ciel.

Meh there are too many trolls on TSR, we are paranoid now.

So, OP, what exactly is your condition?

It's a skeletal condition where I have extra calcium in my long bones due to a gene mutation affecting the cholesterol gene but strangely no bad cholesterol

Reply 12

username2393237

Are you/were you resentful about having it?

Reply 13

hannibalwilleat

Could you post a picture of yourself?
And what stage are you in of education?

Reply 14

Ciel.

Original post by EuropeanAcamedic

Man, sounds really tough. : <

Reply 15

EuropeanAcamedic

Original post by YaliaV

Are you/were you resentful about having it?

Always when reality hits me in the face but I honestly forget that I'm classified as disabled so I guess it's just second nature

Reply 16

Ciel.

Original post by hannibalwilleat

Could you post a picture of yourself?
And what stage are you in of education?

Wth dude

Reply 17

EuropeanAcamedic

Original post by hannibalwilleat

Could you post a picture of yourself?
And what stage are you in of education?

A picture? of me in my wheelchair ?

and I'm in university now despite doctors predicting that I wouldn't be able to walk or talk

Reply 18

EuropeanAcamedic

Original post by Ciel.

Man, sounds really tough. : <

That's just the simple stuff, also my left foot is clubbed so it's no like I can wear heels

Reply 19

hannibalwilleat

Original post by EuropeanAcamedic

A picture? of me in my wheelchair ?

and I'm in university now despite doctors predicting that I wouldn't be able to walk or talk

Sorry, I didn't mean to seem rude. I just wanted to see the physical impact of the condition. A generic google image would suffice.

What are you studying?