THE MASTOCYTOSIS REFERENCE CENTER OF BRAZIL


Brazil is gaining the very first MASTOCYTOSIS REFERENCE CENTER in all of Latin America!!!!    This is the answer to many tears and prayers begging for somewhere to go, somebody to care and to help the patients!!!!



If anyone has been wondering where I´ve been, and why I´ve not be on the forum for the past few months it´s because of this very reason!!

Back in February of this year Dr. Luis Escribano approached me and asked me if I would be willing to support him and the doctors here in Brazil in setting up a Reference Center for Mastocytosis.   Dr. Escribano founded just such a network in Spain many years ago and those patients enjoy the very best treatment in any of the countries where a center has been started.  This is because Dr. Escribano has connected to REMA, the Spanish Network for Masto, an international patient association as well as a website and patient forum.  This way the three work as one unit with patients and doctors interacting.   This is Dr. Escribano´s goal and dream for Brazil.   This is why he contacted me.  

So why me?  without my ever intending this, all of the hard studying and searching for doctors has ended up turning me into the perfect support person for the doctors here.  Because the vast majority of medical literature on masto is written in English, this gave me an edge.  The fact that we have no real authorities in masto, and really, only a handfull of doctors who know masto, it left me with my severe reactions virtually on my own, trying to find answers and help.  It forced me to reach out to the researchers, mainly Dr. Castells and Dr. Escribano.  I began speaking with them back in 2008 when my case finally began to reveal itself as a very complex case of an autoimmune form of masto.  The severity of my reactions forced me to become a very aggressive advocate for my own health and this in turn has helped me to be able to teach and support patients as well as doctors.  In recognizing this, Dr. Escribano asked for my support since I already had various Brazilian patients seek me out to help them find doctors here in Brazil.  

So, this is what I´ve been busy doing for the past few months.   We are going to be holding our very first patient meetings in Sao Paulo next week and in Rio de Janeiro the following week.  Dr. Escribano is holding a teaching course for any Brazilian doctors interested in learning about masto in order to help raise awareness of the medical community here.  He has also insisted in opening up a half day of classes for the parents and patients for their benefit in order to learn and be instructed about masto and the triggers in hopes of aiding them in learning about how to bring more stability to the disease.

In the meantime, I´ve been working double time trying to set up a patient forum as well as an international patient association.  The association is rather a complex little ditty and it´s going to take a bit of work to get it official, but things are moving in the right direction.   The patient forum is almost ready to open and thanks to Deborah and the tremendous opportunity I´ve been given to learn how to help other patients, I know that I will be able to provide the same kind of Home and Safe Haven that our home here has provided for us!  Imagine if you were unable to speak English and were unable to find anyone you knew who understood what you had and what you went through on a daily basis!  This is what the Portuguese speaking patients live with and they have no way to learn from one another, to share their fears and have them relieved, or even just and opportunity to vent a bit about their grief of having Masto!!!  This has been a burden I have felt ever since I found out it was masto which I had!!!

So, although I have been very busy, I´ve not disappeared.  I will continue to be here, only it will have to be more sporatically.   I have been totally away from the forum for the past few months due to having to prepare for the upcoming meetings, but once they are over, this will change and life will calm back down a bit and I will be able to get back on here as before.   I´ve missed being here, it´s a home for me and I miss my friends!!  

So, this is my news and what has kept me away.  I´m sorry to have been absent but  I´M ABSOLUTELY THRILLED THAT FINALLY IN BRAZIL WE HAVE A HOME AND DOCTORS TO RUN TO!!!!!!!!!!!!!!!


All my love to everybody here!!!!

Lisa

Great to see you have the chance to use your experience to help others  Lisa
Wishing we had the same chance in Australia but doctors hear are not interested
I think thay make to much money and have lost the cearing
Peter