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Fibrodysplasia ossificans progressiva

11

Sadly, we just found out my teachers 18 month son has it. I'd never really heard about it until now, and all I seem to find on the Internet is more medical explanations of things, it doesn't say how fast it progress's or what kind of life the person who's suffering can expect to have. I know it's quite rare so won't be suprised if people know little about it. But I was just wondering if you know anyone who's suffered from it and can tell me more about the kind of care involved etc.

Reply 1

username47781

20

more info on it here http://www.emedicine.com/derm/topic609.htm

Reply 2

crosseyed_cat

oh my god it sounds terrible!! :frown:

Reply 3

lovelee-jublee

12

We heard a little about this when I was doing Biology last year (FOP it was called), and is it where the bones break and reform, or bones form in odd places? Sounds dreadful, and I think the life expectancy wasn't past 30, but I may be mistaken.

Reply 4

shinytoy

18

i did a progect on it at school. its where all the parts of the body muscles and tissues turn to bone. its very very rarew i think less than 50 people in the world have it

Reply 5

Ataloss

13

-x-buttercup-x-

Sadly, we just found out my teachers 18 month son has it. I'd never really heard about it until now, and all I seem to find on the Internet is more medical explanations of things, it doesn't say how fast it progress's or what kind of life the person who's suffering can expect to have. I know it's quite rare so won't be suprised if people know little about it. But I was just wondering if you know anyone who's suffered from it and can tell me more about the kind of care involved etc.

It is a very rare condition and not one I know much about.

Basically, skeletal muscles (basically those surrounding and aiding bone function) turn into bone. This means that bones join together stopping them from working properly. Therefore, the bones are unable to function properly and the patient is unable to do anything which involves the use of bones - i.e - movement.

The speed at which this happens depends on the type of fibrodysplasia progressiva but patients are usually immobile by the time they are 30. This unfortunately means they require all basic hygiene care and full nursing care to prevent pressure sores etc..

I have tried to explain this basically and hope it does not come across as being patronising or too simple.

Reply 6

hanadeka2002

Oh god I saw a documentary on this a few months back.It was awful...basically sufferers have to make a decision as to whether they want to spend the rest of their life sitting or standing.

Also it can suffocate people to death if their breathing muscles turn to bone...

God what a terrible condition.

Reply 7

55909

1

There was a programme on channel 4/5 a few months back "Remarkable people" or some thing like that. Anyways, there was an 8 year old girl on it who had it, she had little movement sin her elbows and her legs were slowly turning to bone also. If she gets knocked at school or at home it can cause a reaction of excessive bone growth. Every now and then she had additional growths on the back of her ribs which were constantly surveyed by specialists. Apparently people say that if u opperate to remove the extra bone growths then the body fights back and replaces it with up to triple the residue or something. It was a devastating programme to watch! I'm so sorry to hear about your teacher. The programme showed an older man (about 47? i think) his muscles had turned compltely to bone, he had had to chose whether to stand or sit for the rest of his life, he chose to stand and wear a sort of corset to stop his back from bending for the rest of his life. Despite his horrible horrible disease he was relitively happy, as he said there are life stealing diseases, at least he still had life, however painful, unpleasant or frozen it was.

Ditto about the respiratory system btw

I hope your ok *hugs* its pretty disturbing to learn about! I just had news that a family friend has mouth and throat cancer despite not smoking =(

~* Robs*~

Reply 8

brimstone

7

One of my teacher's sons died a few week back (not of this though).

Reply 9

FireDeuce

14

Simon Armatige (that poet you study at gcse) was talking about something very very similar to that, if not that at poetry live. He said that he was diagnose with it , and he had to decide where eventually he'd freeze. But then it went away suddenly. He believes it was to do with poetry, but im sure there are other thoughts.

Reply 10

xoxo_GossipGirl

OP

11

Thanks for the info everyone, it sounds really horrific, I can't believe how well she's coping with it, she only found out last week and she's coming back to school on Monday!

Reply 11

Lofty

13

I really do admire people like that, especially to come back to school. I would imagine she wouldn't want to be fussed over too much though....

Reply 12

mrteacher

1

this is why we must all be grateful for all we have and stop moaning. u never know whats coming your way. as a small medical miracle myself [i wasnt meant to live when i was born] all i can say is that u get to appreciate life a little bit more.

Reply 13

kateykat

mrteacher

this is why we must all be grateful for all we have and stop moaning. u never know whats coming your way. as a small medical miracle myself [i wasnt meant to live when i was born] all i can say is that u get to appreciate life a little bit more.

Exactly!

This sounds like such a dreadful condition...my heart really goes out to that little boy. :frown:

Reply 14

bert86

Thats cant be nice, they have to decide if they want to live standing or sitting.

Reply 15

dede

11

I do believe I just read an article about a breakthrough being made for this disease. Here, read the article!

http://www.sfgate.com/cgi-bin/article.cgi?f=/n/a/2006/04/23/national/a195747D61.DTL&hw=bone+disease&sn=001&sc=1000

Reply 16

Fluffy

15

bert86

Thats cant be nice, they have to decide if they want to live standing or sitting.

My friend is a FOP researcher at Oxford...

Prognosis usually depends on severity etc. If the muscles of rib cage become involved then the patient can't breath, and eventually get something called 'restrictive lung disease', which is kind of what it sounds like - they chest can't move properly, there for lung volume is resticted.

Reply 17

sssh

10

I read in the paper this week that they've discovered the gene that causes this, so there might be some hope of better treatments.

I saw that TV programme, it was awful. There was something on it a few years back, on a series called Mutants, I don't know if anyone remembers that. Some of the images were quite shocking, like the skeleton they had of someone who had suffered from it.

Really sorry to hear about your teacher's son.

Reply 18

Talya

16

Fluffy

My friend is a FOP researcher at Oxford...

Maybe you could put these 2 in contact? I'm sure the lady would appreciate someone telling her about all the research being done on this disease.

Reply 19

Fluffy

15

Talya

Maybe you could put these 2 in contact? I'm sure the lady would appreciate someone telling her about all the research being done on this disease.

It wouldn't be ethical. There are so few FOP sufferers in the UK, 'introducing' people could actually compromise research...

To see what research is being done, put the search term 'Fibrodysplasia ossificans progressiva' in to this site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi

Fibrodysplasia ossificans progressiva

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