Here is a news about a new research that is going on in UK to cure EB.
Therapy to switch off defective gene which causes EB
This looks less riskier than BMT given that it is the patient's own corrected cells are being transplanted back to the body. They are yet to find a way to transplant it back.
I am thankful that at least I can see some hopeful news once in a while.
But I always wonder that why can't someone find a way to give the protein that is missing in these patients as a medicine or a medicine that helps to generate this protein. In Anna's case she had lack of protein called Laminin 332. For other gene related problems there are alternative ways to solve that. For example, Thrombosis, it is because of gene defect, protein-s deficiency. Because of this protein defect, one's blood will clot too fast. The solution for that problem is use a blood thinner like Heparin injections or take aspirin tablets by mouth. Why can't someone find something like this for EB.
I also read somewhere that for EB simplex, the missing protein, Keratin, can be increased by using a substance in Brocolli. Why can't people do research on these. Is there any food that
gives Laminin 332. Even for Collagen, another missing protein in other forms of EB also is
well known, which is used for anti aging formulas. But I can't find any information about
Laminin. By can't people do some research on these things to save life of these babies??