Discussion For Africans With Rare Diseases

There’s so little treatment and awareness about rare diseases in my country. Stories just as mine abound in homes across Africa. I know some people who are having things much worse. It took me more than 12 years to be cognisant of my illness. The negativity with which doctors and care givers talk about patients with not widely known diseases is deserving attention. Doctors have told me: “Sorry, there is no medical solution; I can’t do anything to help you; Go and use magical tactics or black magics.“
More often we are objects of pity, rather than addressing the issue. In your world, when people find themselves in a most awkward predicament, they muster the courage to do something and help others who might be experiencing the same thing. Here what you get is only pity and abandonment. I pray that the humane spirit of understanding the suffering of others and wanting to do something about it comes on my people. I’m just so frustrated, but I now have a much better understanding of what is happening to me. And whatever may come, Getting it off my conscience that my present state was induced by ‘magical encroachment’ and such other ludicrously statement arising from error, gave me some ease.

Wow, Ola, this is a new issue for this group. I don't think any of us have had our ailments blamed on "magical encroachments" before. It must be frustrating indeed. I hope the knowledge and experience of this group is helpful to you.