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Fibrodysplasia Ossificans Progressiva: What can be done?
We've been on a trek in Nepal and our guide told us about a really strange medical condition his 11 years old sister has. We encouraged our guide to take her to a hospital in Kathmandu. Apparently they diagnosed her with [Fibrodysplasia ossificans progressiva](http://www.wikiwand.com/en/Fibrodysplasia_ossificans_progressiva).
From what I understand this is an extremely rare condition and the Wikipedia article suggests there is „no cure or approved treatment“ now but seemingly there’s also a lot of research going on.
**Here are my questions:**
* Is there anything that could be done to prevent her fibrous tissue to be ossified?
* Is there a research program that might actually help her?
* If there’s still no cure or treatment, what could be done to make her life as happy and comfortable as the circumstances allow.
* The family is financially disadvantaged. Is there any organization or fund which might be able to help? (I know this question might be unsuitable for this sub)
**Imgur links to the photos our guide sent us:**
* [Notes from the hospital](https://imgur.com/a/Juqby)
* [Xrays](https://imgur.com/a/Whxgn)
* [Back and posture](https://imgur.com/a/qKpFr)
Thank you in advance for taking the time.
From what I understand this is an extremely rare condition and the Wikipedia article suggests there is „no cure or approved treatment“ now but seemingly there’s also a lot of research going on.
**Here are my questions:**
* Is there anything that could be done to prevent her fibrous tissue to be ossified?
* Is there a research program that might actually help her?
* If there’s still no cure or treatment, what could be done to make her life as happy and comfortable as the circumstances allow.
* The family is financially disadvantaged. Is there any organization or fund which might be able to help? (I know this question might be unsuitable for this sub)
**Imgur links to the photos our guide sent us:**
* [Notes from the hospital](https://imgur.com/a/Juqby)
* [Xrays](https://imgur.com/a/Whxgn)
* [Back and posture](https://imgur.com/a/qKpFr)
Thank you in advance for taking the time.
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