What Is FOP - The Mannequin Disease?

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Free Photos

What Is Fibrodysplasia Ossificans Progressiva?

Fop as it is better known is a progressive genetic disease that causes the soft tissues of the body to turn into bone. The persons muscles, bones, tendons, ligaments and other soft tissue along with other connective tissue gets taken over by bone. The bone will grow wherever an injury has taken place. But even on uninjured tissue the bone will start to grow and cause a bridge between the connective tissues.

The bone will also begin to grow over all the joints in the body, therefore freezing the person into place. This may take months or years, but one day the person will find that they won't be able to move that part of their body again, therefore the reference to a mannequin comes into play.

FOP is caused by a genetic mutation and there are 45 people in Britain with the disease, and only 700 around the world. The first signs that a child may be developing the condition is the birth growth of two malformed big toes. This is usually visible from birth, but may develop a few months later.

The bone growth typically goes from the top of the body to the bottom. Starting at the neck, They will start to stiffen up around the neck, shoulders, top of the arms and down through their body to the feet.



Explaining Fibrodysplasia.

New Genetic Approach To Treat FOP

So What Causes It?

There is a mutation in the gene named ACVR1/ALK2, a bone morphogenetic protein receptor that happens in all the affected individuals. People who have FOP carry one normal copy and one damaged copy of the gene in each and every cell. In layman's terms this means that the mutation will increase the amount of BMP in the cells to greater than the normal levels. Therefore kicking off the sequence however wrongly, that makes the cells believe that they have to make more bone.

Scientists now hope to use a special type of RNA molecule engineered to specifically switch off the damaged copy of the gene. This process is known as RNA Interference, RNA1.

This process restores the cellular function by getting rid of the mutant cells. In other words the bad cells are taken away, therefore adjusting the proteins activity back to normal.

The clever thing about the whole process is that the stem cells are taken from the patients own teeth. The patients siblings also contributed their teeth to balance the normal controls. Believe it or not, this is called the Fop Good Fairy Tooth Program.

Obviously scientists have a long way to go. Testing on mice will need to go ahead for some time, and other considerations have to be looked at. For example safe delivery of the RNA into human cells.

Louise Wedderburn  FOP Disease Mannequin  public domain
Louise Wedderburn FOP Disease Mannequin public domain

Louise Wedderburn the Human Mannequin

Louise Wedderburn from Fraserburgh in Aberdeenshire Scotland has the disease. She is 19 years old. Recently seen on TV in Britain, Louise states that the condition is not going to beat her. Her condition is getting worse and she fears that she will be frozen in an upright position.

Standing up straight or even sitting down is a problem because of the way her bones have formed. She is afraid that she will be confined to a Wheelchair, but even that will be a problem because of the shape and position of her frozen bones.

But does she feel sorry for herself? No way! Even though she has been home schooled, she has attended a school prom, absolutely adores fashion, and has even taken her first steps into the world of fashion with a stint at London Fashion Week and work experience at Elle Magazine. This girl is not giving it up easily. She has recently started her own Fashion Blog.

louise wedderburn human mannequin mirror.co.uk
louise wedderburn human mannequin mirror.co.uk

An Inspiration.

Louise first noticed her condition at the age of three, when she fell over and hurt her elbow. It turned out to be FOP and not a broken arm. As she got older and hit her teens the FOP took over more and she is now frozen in both her arms, and her spine is frozen too.

She is determined to continue in the world of Fashion, but obviously must be careful not to overdo it. As if she gets any knocks it can cause her body to spontaneously grow more bone.

Harry Eastlack skeleton public domain
Harry Eastlack skeleton public domain

FOP Cases In History

There have been many stories that state people have turned to stone. But are they talking about Fibrodysplasia? Well it certainly seems to be.

The best known case is a Harry Eastlack (1933-1973).

His condition started to affect him at the age of ten and by the time he died November 1973, his whole body had turned into a 'statue'. With only his lips being able to move. He was 6 days away from his 40th birthday.

His whole body had ossified. Before he died he made it known that he wanted to donate his body to medical science to try to stop the disease. His skeleton is now at the Mutter Museum in Philadelphia.

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Comments 117 comments

tillsontitan profile image

tillsontitan 4 years ago from New York

There are so many rare diseases we have never heard of...this is one of them for me. I was feeling really bad for all the people you had mentioned after reading your explanation but seeing that video of the little Josh broke my heart. I have a three year old grandson and can't imagine the pain and heartache of watching such a beautiful little boy face what lies ahead for this little guy! And, that beautiful 19 year old girl with the spunk and determination....Lord, help me to have 1/2 of their courage!!!

Voted this up, useful, awesome, interesting and shared.


carol7777 profile image

carol7777 4 years ago from Arizona

I have never heard of this and the photos are enlightening to this terrible disease. Though we all don't like to hear about these things you did a great job in educating. Thanks for sharing ...Voting UP.


rcrumple profile image

rcrumple 4 years ago from Kentucky

I was completely unfamiliar with the disease. I would ask about the pain aspect of this, but I'm guessing that since there is no movement, the pain would be minimal ... at least the physical pain. Really hope things progress in being able to treat this, not just for the young lady, but for all that suffer! Very interesting topic, Nell! Up & interesting!


Sinea Pies profile image

Sinea Pies 4 years ago from Northeastern United States

Nell, I cringed all the way through this. You know, we don't appreciate our good health. Complaining about a little ache or pain when there are people suffering like this. Thank you so much for making me aware of this disease. Voted up and awesome.


TIMETRAVELER2 profile image

TIMETRAVELER2 4 years ago

I cannot imagine the amount of pain these poor people must have, it must be horrible. This is one I've never heard of, but doing so makes me feel a lot less sorry for myself and my own health issues. Wonderfully done hub, Nell, but scary. Voted up.


Natashalh profile image

Natashalh 4 years ago from Hawaii

Wow...this is so creepy! I'd never heard of the disease, though I've heard of thr Mutter Museum. Somehow unsurprising that the skeleton is there!


kansasyarn profile image

kansasyarn 4 years ago from Rural Midwest

Well written and informative. Good job!


bac2basics profile image

bac2basics 4 years ago from Spain

Hi Nell. You have to admire those who are given so much to contend with yet fight for all they are worth to carry on as normal a life as possible. I couldnĀ“t watch the videos on this hub as I knew I would have been in tears just watching the courage displayed by those sufferers you featured. Lets hope a cure is put out there soon.


Janine Huldie profile image

Janine Huldie 4 years ago from New York, New York

Seriously, never heard of this before and thank you for a bit of an education here. Have of course voted up and shared all over to educate others on this rare disease.


Silver Fish profile image

Silverfish 4 years ago from Edinburgh Scotland

Very informative hub, fascinating reading.


Your Cousins profile image

Your Cousins 4 years ago from Atlanta, GA

Interesting hub. I learned a lot from your article and from the videos. I am richer from having met Louise and Josh -- two very special people who are determined not to let FOP get them down. I hope that you will do a follow-up on Josh. Voted up and useful.


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi Your Cousins, I will try and look into Josh more, as I just found him on YouTube, thanks so much for reading, nell


Gypsy48 profile image

Gypsy48 4 years ago

Interesting article Nell. I had never heard of this horrible disease. What a struggle for Louise and Josh, wish a cure would be found soon. Thanks for sharing.


Nell Rose profile image

Nell Rose 4 years ago from England Author

Thanks for reading Silver Fish, glad you liked it, nell


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi Janine, thanks so much, I just saw it on tv last week and suddenly remembered to look into it, thanks!


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi anne, yes lets hope the dna or rna thing goes ahead and can hopefully turn off the bad gene, that will be so great, thanks so much for reading, nell


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi kansasyarn, thanks so much for reading, nell


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi Natashalh, yes I have heard of it too, but can't remember why! lol! thanks for reading, nell


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi Time, thanks so much, yes I totally agree, when we moan about something it doesn't bare thinking about how these people cope with something like this, it makes me feel ashamed to moan! thanks so much for reading, nell


Nell Rose profile image

Nell Rose 4 years ago from England Author

Thanks Gypsy, yes I do hope in a couple of years the gene therapy will go through, I do believe that's what they mentioned on louises program, fingers crossed, it will be wonderful, nell


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi Sinea, yes I totally agree with you, they are so brave with this, and I love louises spirit for doing her fashion stuff, good for her, thanks nell


Nell Rose profile image

Nell Rose 4 years ago from England Author

Thanks richard, yes it's a fascinating look at how the body does strange things, then we have to look at the human value and see the pain, but those people in the vids have so much spirit, good for them, and good luck to them in the future, thanks nell


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi carol, thanks so much, yes poor little Josh, the fact is that only 700 people around the world have it, how strange is that? hopefully the cure is there on the horizon, and they are young enough to be able to adapt to it, thanks for reading, nell


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi mary, thanks so much, yes their courage is amazing, as long as josh can carry on as much as he can, and louise too, then hopefully they will see a cure in their lifetime, thanks nell


billybuc profile image

billybuc 4 years ago from Olympia, WA

I am blown away by this hub! I had no idea this existed. What a horrendous condition....I can't even imagine what this would be like. Thank you my friend for bringing this to the light of day. Simply amazing and horrible.


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi billy, thanks for reading, yes it is a horrendous thing to happen, hopefully soon there will be a cure and then it will be something of the past, thanks as always billy, great to see you, nell


aviannovice profile image

aviannovice 4 years ago from Stillwater, OK

I hope that something can be done for these people soon. I just cannot imagine turning to "stone" and never being able to move again.


elle64 profile image

elle64 4 years ago from Scandinavia

Sad ,so sad .I never heard about this disease-


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi avian, thanks for reading, they really do have so much courage, and determination, good on them I say, makes me feel so humble, nell


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi avian, thanks for reading, they really do have so much courage, and determination, good on them I say, makes me feel so humble, nell


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi elle, thanks for reading, nell


btrbell profile image

btrbell 4 years ago from Mesa, AZ

This is horrible. Not the hub, the disease. I had no idea such a horrific disease existed and I thank you for bringing it to light for me in such a clear, comprehensive hub.


always exploring profile image

always exploring 4 years ago from Southern Illinois

This is so heartbreaking. The video of Josh was difficult to watch. This is a new disease to me. We didn't study it in nurses training. Thank's Nell..


kittythedreamer profile image

kittythedreamer 4 years ago from the Ether

This is awful. I've never heard of this until now, Nell. And I'm glad you educated me on this, because if I ever have a patient with this condition at least I'll have a basic understanding of it. How sad, but how gorgeous is she? Voted up and useful.


Chewy Mommy 4 years ago

I never knew this disease even existed. It's so tragic. Little Josh's story broke my heart. It really makes you stop and realize the problems that seem so big in our own lives are really small compared to what others have to go through.


girishpuri profile image

girishpuri 4 years ago from NCR , INDIA

Very informative and useful hub, i have never heard bout FOP before, thanks for the update, Nell.


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi girishpuri, thanks so much for reading, nell


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi Chewy, that's it exactly, I was moaning this morning that I had a back ache, then I pulled myself up and told myself not to be so ungrateful, thanks so much for reading, nell


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi kitty, yes she is so pretty isn't she? she would make a great model, such a shame, but then again her attitude is go for it, so good on her, thanks so much for reading, nell


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi Ruby, that does make sense I suppose because there are so little sufferers from it, I had been aware of it before, but properly until I saw the louise program, that's what you call grit and determination good on her! thanks so much for reading, nell


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi btrbell, thanks so much for reading, and I totally understand what you mean, glad you liked the hub, nell


mperrottet profile image

mperrottet 4 years ago from Pennsauken, NJ

What a horrible disease. Let's hope that the Good Fairy Tooth program is successful, and they can find a cure. This is a really good, comprehensive review of a little known disease. Voted up and interesting.


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi merrottet, thanks for reading, yes it is a strange disease, and one I hope they can find a cure for, thanks nell


alocsin profile image

alocsin 4 years ago from Orange County, CA

This is quite scary and something I didn't know about. It's great that you've enclosed a video showing somebody who won't let the disease get the best of her. Those are always inspirational. Voting this Up and Useful.


molometer profile image

molometer 4 years ago

Hi Nell,

What an incredible story, these poor people.

It must be hell, to live daily watching your body seize up.

It was good of that chap Harry Eastlack, to donate his body to science, maybe they will figure something out.

3/5 and voted up. Sharing.


Victoria Lynn profile image

Victoria Lynn 4 years ago from Arkansas, USA

I have never heard of this disease. How awful. And how brave Louise is. Bless her heart. I hope a cure is found. Thanks for sharing this.


VeronicaFarkas profile image

VeronicaFarkas 4 years ago from Ohio, USA

This is very interesting, but so horrific. I can't imagine the shock and fear felt when first hearing the diagnosis, and as the disease progresses and the body "freezes" a little at a time. It must be so scary.

Louise is an inspiration. I, too, hope that a cure is found!


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi Veronica, I believe the illness starts off when they are young, so they get used to it over the years, but still it is a hard thing to put up with, good for them and louise for showing how strong they are, and thanks for reading, nell


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi, Victoria, thanks so much for reading, nell


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi Michael, yes I hope so, hopefully a cure is just around the corner, fingers crossed, thanks as always, nell


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi alocsin, yes louise was on tv and she was such an inspiration, that's what started me on the look out for the subject, thanks so much for reading, nell


grandmapearl profile image

grandmapearl 4 years ago from Southern Tier New York State

Nell, this is amazing stuff! I hope medical science can help these people sooner rather than later. Makes all those little everyday aches and pains seem less than trivial in comparison. Thanks for calling attention to this heart breaking condition. Voted Way Up


lovedoctor926 4 years ago

thanks for spreading awareness about this rare disorder. I don't mean rare in a bad way just its not too common


BlossomSB profile image

BlossomSB 4 years ago from Victoria, Australia

What a horrible disease! I do pray that the cause and cure can be identified soon. Thank you for telling us about it.


drbj profile image

drbj 4 years ago from south Florida

This is a rare devastating disease and it is gratifying to know that scientists are testing RNA molecules to halt its spread in the afflicted individuals. Thanks for your assiduous research in bringing this to our attention, Nell.


bethperry profile image

bethperry 4 years ago from Tennesee

Nell, what a horrible disease! I sure hope science can help bring a cure very soon. I read this Hub and couldn't help but feel so very fortunate compared to these victims of the disease. Inspiring and useful, voted up.


teaches12345 profile image

teaches12345 4 years ago

Nell, I hope research is increased and does produce some cure soon for this disease. What a brave woman Wedderburn is to continue liviing with hope. I had not heard of this disease before, my heart goes out to those who suffer from the effects.


christopheranton profile image

christopheranton 4 years ago from Gillingham Kent. United Kingdom

Thank God it is a very rare disease. I hope they find a cure soon.


Nell Rose profile image

Nell Rose 4 years ago from England Author

Thanks christopher, yes I hope so too, thanks for reading, nell


Nell Rose profile image

Nell Rose 4 years ago from England Author

Thanks for reading teaches, yes louise is really brave, and I do hope they find a cure for this, its a very strange disease but hopefully soon it will be eradicated, nell


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi beth, yes me too, and really great to see you, hope the books going okay?


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi drbj, thank you for reading it, it was on tv and really got my interest, thanks so much, nell


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi Blossom, thanks so much for reading, nell


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi lovedoctor, thanks so much for reading, nell


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi grandmapearl, thanks for reading and the vote, yes I agree when we moan about aches and pains it does certainly put it into perspective, thanks nell


Nell Rose profile image

Nell Rose 4 years ago from England Author

Thanks Haydee, I totally agree with you, nell


Rosie writes profile image

Rosie writes 4 years ago from Virginia

I had never heard of this condition. Thanks for providing such in-depth information. Excellent article!


Richard Craig profile image

Richard Craig 4 years ago from West Midlands, England

I saw that program on the BBC about Louise Wedderburn. I'd never heard of the disease before then. She was pretty amazing at coping with it and she never let it get her down. Truly an inspiration.


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi Rosie, thanks for reading, nell

Hi Richard, yes she was wasn't she? such a sweet little thing, so sad, thanks for reading, nell


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi Rosie, thanks for reading, nell

Hi Richard, yes she was wasn't she? such a sweet little thing, so sad, thanks for reading, nell


K9keystrokes profile image

K9keystrokes 4 years ago from Northern, California

Wow, this is absolutely terrifying condition. Your hub really gives us an in depth look at FOP. At 19, Louise Wedderburn is an amazing inspiration. Good stuff, Nell!

HubHugs~


b. Malin profile image

b. Malin 4 years ago

Hi Nell, I had never heard of FOB, before I read your most Educational Hub. What a Sad disease, with no Cure. Doctors are still learning about this rare disease, which hopefully one day, there will be a cure for. Thanks for sharing this Enlightening Hub.


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi K9, thanks for reading, yes Louise is amazing isn't she? such a strange condition, thanks, nell


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi b. Malin, thanks as always for reading, nell


nifwlseirff profile image

nifwlseirff 4 years ago from Villingen Schwenningen, Germany

The pain must become unbearable for FOP sufferers. I have an immense amount of respect for people who continue to chase their dreams, despite the incredible challenges they face. Thanks for raising awareness of this very rare disease!


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi nifwlseirff, yes I totally agree with you, to suffer from something like this but not let it put you off is amazing stuff, I have so much respect for all the sufferers, thanks for reading, nell


Michele Travis profile image

Michele Travis 4 years ago from U.S.A. Ohio

It is so sad and horrible for the people who have this. I pray there is a cure or a way to prevent this from happening is found.

Thank you so much for writing this.


Nell Rose profile image

Nell Rose 4 years ago from England Author

Thanks Michele, yes I totally agree with you, this is such a horrible thing to have to put up with. I hope they continue to study it and find a cure soon, it looks like its on the horizon so thank goodness for that, thanks for reading, nell


torrilynn profile image

torrilynn 4 years ago

this hub was very interesting and unique. I thought I was worst off when I found out that I had Lupus, but this disease is far worst than that. I would be sad if I had this disease but I would continue living life. Such as Louise is by continuing to model and fighting the disease. I am inspired by this and other FOP individuals. Thank you. Voted Up.


Nell Rose profile image

Nell Rose 4 years ago from England Author

Hi torrilynn, thanks for reading, I am sorry to hear you have lupus, yes Louise is a real inspiration, as are the other FOP individuals too, thanks, nell


JamaGenee profile image

JamaGenee 3 years ago from Central Oklahoma

A friend had this or a similar condition. I say "similar" because her muscles didn't start turning to bone until her late 30s/early 40s after what she first thought was whiplash when her car was rear-ended. The opposing insurance company demanded a medical report, which showed it wasn't whiplash at all (but the accident may have triggered the onset). Personally, I always felt, in her case, the cause was her taking near-lethal combinations of whatever street drugs were floating around (this was the 80s). If I'm wrong, then putting so many different chemicals in one's system at once probably didn't help matters. My heart goes out to those who were born with the malfunctioning gene, and hope a cure is found ASAP.


Nell Rose profile image

Nell Rose 3 years ago from England Author

Hi Jama, great to see you! yes you could be right, I am sure taking those chemicals probably didn't help your friend, such a shame though, thanks as always, nell


Nell Rose profile image

Nell Rose 3 years ago from England Author

Hi Jama, great to see you! yes you could be right, I am sure taking those chemicals probably didn't help your friend, such a shame though, thanks as always, nell


PDXBuys profile image

PDXBuys 3 years ago from Oregon

That was a fascinating article! I didn't know anything about this disease before I read your hub. Now I want to do more research... Louise Wedderburn is a courageous and beautiful young woman. Inspirational...


Nell Rose profile image

Nell Rose 3 years ago from England Author

Hi PDX, yes she is isn't she? I hope they do find a cure for it soon, she and all the other sufferers deserve it, thanks for reading, nell


eHealer profile image

eHealer 3 years ago from Las Vegas

Nell, this is fascinating! I've been an RN for 30 years and have never seen this rare disease. How horrifying for the sufferers, ossification and immobility with a clear and unaffected mind! Thanks for writing this fantastic hub, you are an excellent writer! Pinned and Facebooked for sure!


Victoria Anne profile image

Victoria Anne 3 years ago from Las Vegas

Wow this is really shocking. Thank you for sharing and spreading knowledge about this disease, hopefully a cure will be found soon.


Nell Rose profile image

Nell Rose 3 years ago from England Author

Hi eHealer, thanks for reading, I think its because its so rare, it doesn't appear in the hospitals very often, thanks so much for your lovely compliment, you made my day! lol!


Nell Rose profile image

Nell Rose 3 years ago from England Author

Thanks Jama, yes I get confused with all the changes too, thanks for the email I have written it down, so I will delete it now, thanks so much, nell


Nell Rose profile image

Nell Rose 3 years ago from England Author

Hi Victoria, thanks for reading, yes I totally agree, wouldn't it be great if they can find a cure?


KenWu profile image

KenWu 3 years ago from Malaysia

This is so scary... can't imagine if I myself turning into a statue. I hope someday, a cure would be found and end this disease.


Nell Rose profile image

Nell Rose 3 years ago from England Author

Hi Ken, thanks for reading, nell


ZipperConstantine profile image

ZipperConstantine 3 years ago from United States

There are so many diseases and syndromes in this world. Some of them so awful (like the mannequin which I just learn of from you) it is almost unbelievable. We have so far to go in understanding the human body and how to heal all the zillions of problems it can have. One day I hope there will be genetic tests you can take before having children that can identify horrible diseases so we can stop passing them on.


Nell Rose profile image

Nell Rose 3 years ago from England Author

Hi Zipper, yes hopefully they will find a cure for all those people who have this and other illnesses, its such a shame, thanks for reading, nell


Spongy0llama profile image

Spongy0llama 3 years ago from Canada

Fascinating. I saw this on an episode of Mystery Diagnosis a few months back. Makes me afraid of having children to know what kind of hand nature can deal them :/


Nell Rose profile image

Nell Rose 3 years ago from England Author

Hi Spongyollama, yes I do understand where your coming from, its a fascinating yet unpleasant illness, hopefully they will be able to discover a cure for FOP soon, thanks for reading, nell


FlourishAnyway profile image

FlourishAnyway 3 years ago from USA

Fascinating read on what is thankfully a rare condition. I hope relief in the form of a cure is around the corner for them.


Nell Rose profile image

Nell Rose 3 years ago from England Author

Thanks Flourish, yes here's hoping they find a cure for FOP soon, thanks for reading, nell


Karine Gordineer profile image

Karine Gordineer 3 years ago from Upstate New York

Louise Wedderburn is truly a brave and courageous woman. Thanks for sharing this condition and her story with us.


Nell Rose profile image

Nell Rose 3 years ago from England Author

Thanks Karine, she certainly is, thanks so much for reading, nell


Pawpawwrites profile image

Pawpawwrites 2 years ago from Kansas

Can't imagine having to deal with such a thing. I hope a cure is found for these people who have it.


MsDora profile image

MsDora 2 years ago from The Caribbean

The disease is mysterious, but even more of a wonder is the attitude of these two people you mentioned. Sad and inspiring at the same time. Thanks for the information on this condition.


Nell Rose profile image

Nell Rose 2 years ago from England Author

Hi Pawpaw, yes its pretty grim isn't it? but those guys in the video are amazing! thanks so much for reading, nell


Nell Rose profile image

Nell Rose 2 years ago from England Author

Hi MsDora, thanks so much for reading, yes its such a strange and sad illness, its not something we would even think about or could happen, but their attitude is awe inspiring, thanks again, nell


Nell Rose profile image

Nell Rose 2 years ago from England Author

Thanks Healthnews, glad you liked it, nell


JamaGenee profile image

JamaGenee 2 years ago from Central Oklahoma

Nell, I recently saw a PBS documentary about genetic conditions in fetuses that, after much hand-wringing and weighing the pros and cons of the quality of life their baby would have, the prospective parents chose to end the pregnancy. Although they did not mention the scientific name of one condition featured, I suspect it was FOP, as tests and such had already determined that the baby would never be able to bend its limbs or joints (i.e. its wrists, fingers and toes) or move normally.


LadyFiddler profile image

LadyFiddler 2 years ago from Somewhere in the West

WOW WOW WOW!! what's next in line of these horrible diseases . I am so sorry for her she is such a pretty girl i pray that God heal her soon . This is not nice for anyone to endure i can just imagine what she suffers and others who do have the same sickness.

Thanks for sharing this Nell i never knew about it :)

Now leaving work am outta here :)


Nell Rose profile image

Nell Rose 2 years ago from England Author

HI Genee, yes it certainly does sound like FOP doesn't it? and what a terrible decision to have to make! what's best for the child? I would hate to be in that position, thanks as always, nell


Nell Rose profile image

Nell Rose 2 years ago from England Author

Hi Jo, yes its an awful thing to happen, but I think these amazing people are so brave, and going for it, kudos to them, and good luck to them, thanks as always, nell


LadyFiddler profile image

LadyFiddler 2 years ago from Somewhere in the West

Hi Friend hmm that sure is a scary ordeal to endure. Especially if you look like that in the pictures above where the bones are really bent up. May God have mercy these sickness are initiated directly from HELL.


Nell Rose profile image

Nell Rose 2 years ago from England Author

Hi Jo, back in the old days they probably would think that it was some sort of curse, but of course its pure genetics, sadly, but they are so amazing aren't they?


LadyFiddler profile image

LadyFiddler 2 years ago from Somewhere in the West

That ain't normal nah i believe every sickness is of the devil, satan doesn't like to see anyone happy or in good health. You can relate it to the story of Job in the bible where he afflicted Job's body and family etc. I do not believe everything science prove because they are known to contradict themselves and everything is genetics or hormonal etc. Sometimes they don't know what hoots they talking about.

When Jesus was healing people, He use to always satan come out of the woman or the man etc. Even when Legion who lived in the tombs and had 6000 demons in him that cause him to be mad "mentally ill" Jesus asked them to leave this man and they asked him to send them into the pigs. So as far as science is concerned proving some of these things thumbs down. I ain't saying some don't be true but i think they know a little too much for me.

Have a wonderful day Nelly


Nell Rose profile image

Nell Rose 2 years ago from England Author

Thanks Jo, I am always interested in your opinion, and of course nobody really knows, I tend to go for science but of course religion could well be the answer, hope your having a great day, nell


LadyFiddler profile image

LadyFiddler 2 years ago from Somewhere in the West

Hi Nell well yeah everyone have their right to their opinion i guess. I am cool if you are for science no problem. Just saying how dee doo. Hope you are fine.

Keep good deary :)


Nell Rose profile image

Nell Rose 2 years ago from England Author

Hi Jo, feeling better? thanks for coming back, I think we are probably both right, to be honest! lol!


vocalcoach profile image

vocalcoach 8 months ago from Nashville Tn.

Good heavens! I'm completely 'bowled over' by this terrible disease. Youve done a great job here Rose. I won't be complaining about my aches and pains anytime soon.


Nell Rose profile image

Nell Rose 8 months ago from England Author

Hi Audrey, yes its pretty grim illness isn't it? imagine getting so stiff you turn into a statue! ouch! thanks so much for reading, nell

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