Hello, Paula.
Welcome to Marrowforums. You must have been very shocked to learn that Jorge has MDS. The doctors in the Azores have probably not seen many cases of MDS, but it is important to try to find a doctor who has experience with MDS. An experienced MDS doctor could treat Jorge or work with your local doctor.
We don't read Portuguese, but we looked for the treatment centers or organizations that you might talk to. We suggest that you contact these groups, if you haven't already talked to them:
Hospital de Santa Maria
http://www.hsm.min-saude.pt/
Avenida Professor Egas Moniz
1649-035 Lisbon Portugal
email: contactcenter@hsm.min-saude.pt
Organizacio Portuguesa de Transplatacio
http://www.opt.min-saude.pt
Av. da República,
1069-032 Lisbon, Portugal
Phone: +351 21 792 55 95
Fax: +351 21 797 61 00
Centro de Histocompatibilidade do Sul
http://www.chsul.pt/
Campo de Santana 130
P-1000 Lisbon, Portugal
Phone: +351-21-882-3530
Fax: +351-21-885-0118
At Centro de Histocompatibilidade do Sul you can ask about the Portuguese Bone Marrow Donors Registry (Centro Nacional de Dadores de Células de Medula Óssea, or CEDACE) run by the Portuguese Ministry of Health.
You can find other transplant centers in Portugal on this European Transplant Coordinators Organization (ETCO) page:
http://www.etco.org/transplant_centers_in_europe.htm#p
The possibility of conceiving a child whose stem cells might be a match for Jorge is remote since a child will usually match at most half of one parent's genes. It is much more likely that Jorge will find a donor through one of the many registries available worldwide.
However, there are several drug treatments for MDS that patients can try before resorting to a transplant. You can research
Revlimid,
Vidaza, and
Dacogen on the Internet and read about patient experiences in our forums. Before you consider a transplant, it is important to ask the doctors about treating Jorge with one of these drugs.
Please feel free to post your questions here. There are a lot of people with MDS experience at Marrowforums who are very willing to help.
Regards,
Ruth Cuadra