The story of Eric
I am Eric, I am 15 years old. I am one of the 4 children affected in Spain and less than 65 in the world with progressive bone heteroplasia (POH). It is a genetic alteration, in which the bone forms under the skin. It also transforms muscle tissue into bone.
That bone prevents me from going to school and being able to do physical activities. On the days that I have pain, it totally incapacitates me.
As it is such a rare disease, there is only a private line of research. I live with pain and knowing that there is no cure is very hard. Experimental things are being done, but there is no guarantee.
My pain is a peculiar pain, it’s a feeling like I have 500 needles sticking me and it doesn’t allow me to walk, run and do many things that a person my age could do.
More money should be invested in minority diseases.
I would very much like something to exist so that I know that in the future I will not suffer pain and I will be able to cope better with this disease that has no cure.
I feel a little strange, special and there are days when I feel frustrated for not being able to do things that children who are not sick do. I would like my disease to be studied more and for there to be more funds to be able to get a cure and have a more normal life.
On the other hand, since high school I have not felt valued. I still did not have a diagnosis and I felt bad.
There should be more empathy because 2 out of 10 people with rare diseases take more than 10 years to be diagnosed, as in my case, and that is not the reason why we stopped being sick. This world needs more empathy.