I really must apologize to everyone for my silence. I have been meaning to come on here to give account as to where I've been and what I've been doing since I am one of the moderator's here and have given to Deborah my commitment to support her work here. This is also my "home" and so many of you have been a wonderful support to me as I've also walked along my journey. So, I feel that I need to explain my absence and silence.
It was just over a year ago in February that I had my masto specialist, here in Brazil, contact me desperate for my help. She needed the help of either Dr. Castells or Dr. Escribano. She knew I was in contact with them and knew that they would answer my plea for help.
The emergency was to help to save the life of a very special little boy who was born with an aggressive form of masto. She needed to do a procedure and in doing so, needed support in how to medicate a child so very young. It was a tremendous challenge for anesthesia is one of our worst enemies and medical procedures must be approached with planning and caution. She knew this but she'd never had a child who was so sick to have to work with and this was the challenge. ASM is very rare and even more so in the children - there are very few cases in the literature to help guide doctors.
For you moms and dads out there who have children with masto and are fearing that it's an aggressive form, I hope that you do not become paranoid in hearing this. My doctor has extensive experience as a pediatric dermatologist in working with children with masto. And for those of you who are adults this too is a good lesson. In children and adults when the masto comes out and presents itself, if it is an aggressive form it will show its ugly head right away - it comes out already aggressive - ugly, nasty, and causing all kinds of problems in the blood. One of the things I've learned in my journey is this, aggressive masto is EASY to diagnose and the doctors about jump when they see it! It shows itself through the CBCs first and foremost. Remember, the severity of the reactions has NOTHING to do with the severity of the disease itself. You can be as sick as a dog and yet your Masto can be in the mildest of forms (MCAS). You can be feeling as healthy as an ox and yet have aggressive mastocytosis and not even aware that you are sick! This is the contradiction that mast cell disorders play. If your doctors are not doing jumping jacks and sommersaults when they look at your CBCs then RELAX, you do NOT have an aggressive form of masto. ASM presents itself aggressively and violently. If your symptoms come out of nowhere but your bloodwork is normal or close to normal, then give a big deep breath and relax, your masto is not aggressive, be ye child or adult.
Back to the story -
In asking for my help, my doctor was recognizing that in 30 years of working with children and adult masto cases she had finally run into that one case which required her to seek higher authorities. Not even my case had forced this move.
In contacting both Dr. Castells and Dr Escribano, I received a reply almost immediately from Dr. Escribano and later from Dr. Castells and they were then able to speak with my doctor and help this little baby and I was more than pleased to be the person who helped to make that happen!
About 3 weeks later, out of the blue I got an email from Dr. Escribano. He informed me that he was working with Brazilian doctors to initiate a Reference Center in Mastocytosis here in Brazil! And, to make it more wonderful, he was asking me for my help!!!! He was wanting to implant the very same model of network here in Brazil which he founded in Spain and in asking for my support he also asked that I not only contact the patients, but also begin a masto patient support forum much like this one and also a national patient association!!!
OH MY GOODNESS!!!!!
I was absolutely blown away!!!
Needless to say, it was also about the most flattering thing I've ever experienced for it's been a very hard, uphill climb in studying and questioning and learning from others, and it was open recognition as to how much I've accomplished over the years since I began my own masto journey. In asking for my help, Dr. Escribano was showing me three things: first, that he recognized in me the perfect person who could reach out and find and support the patients here in Brazil, second, that I had a good understanding of masto enough to be that first person contact for patients and last, that I am about the most knowledgeable patient here in Brazil. It was very humbling at the same time as being very gratifying!
But best is that it's given me a chance to do what I've felt a burden to do since before I was a member of this forum. I began my masto journey in 2007 when major surgery forced the hidden, latent disease to come out of the shadows. It came out ferociously totally changing my body and totally confusing my doctors. I got so many false accusations of mental or emocional problems that these acusations themselves traumatized me. Yet it was the size and severity of my reactions which forced me to have to start studying in order to protect myself. When one of my doctors wanted to push me into surgery after we found 3 small gallstones, this was the last straw for had I gone into surgery I would have died on the table in not having any means of protecting myself. It was a hematologist indicated to me by Dr. Akin who saved my life by advising me to cancel my surgery only 2 days prior to the scheduled date. We know I would have died because the prior major surgery had created hemorrhaging during and post-operative, only we weren't able to recognize it as hemorrhaging until much later after we had concrete answers in hand. This close call was my wake-up call and is what forced me to become active on the masto sites, to become a researcher in search of literature which could teach my doctors and in reading and researching I began to make connections and gain understanding of how masto works. My envolvement on the masto sites helped me to learn from other patients and with other patients and as I gained more understanding and comprehension of the disease, the more I spoke with doctors and authorities in trying to understand my own case, the more I was able to share with other patients and teach them what I was learning as I went along. What helped me most was that I had tremendous support from doctors around the world and from my own doctors who were willing and patient enough to answer some of my million and one questions. I would not be surprised that the word "why" was my first major word as a baby, but if it wasn't, it was certainly my favorite word growing up. In loving to learn and understand, I became fascinated with the disease and how it was so complex and yet in how it made so much sense when I lined it up with the cause/effect of my reactions. In learning more and understanding more I learned how to gain control over my reactions and the more control I gained, the more I got my life back as compensation. The greatest reward was that of saving my own life by being able to understand the literature on mice and AAAs and make the connections between my own case and the serious threat I was facing in having an ascending aortic aneurysm. The success in having been able to piece together enough of a puzzle which not only my own doctors couldn't understand but which very few doctors in the would were able to see was enough compensation to encourage me to continue moving on in the right directions.
Yet, I couldn't leave all of this gained information to myself. I didn't want that my illness and my gain in improvement remain only to myself. My thoughts have always been, if I had to end up suffering with a rare disease, why couldn't I somehow bring something positive out of all of this which looks to be so negative? I hated the idea of it all being negative and if I could find benefit for myself, then why couldn't I turn it around to somehow help others and perhaps they too find benefit. It took me very little time to realize that as I gained in understanding, I could help those who were brand new learn at least enough to help them become less fearful in dealing with their disease. Yet it was because of someone whom I consider key in my journey that I realized that I too could pay it forward - Nancy Gould. This tremendous woman went on to help so many of us around the world that it's impressive. Yet, she is who recognized how unusual my case was. She took the time to specifically help me when I was most needing understanding and encouragement. She recognized that I was going through some very unusual reacting and by speaking with a couple of researchers about my case, I was able to gain some extraordinary support and guidance. This was crucial for me for it took me almost two years to find my masto expert here in Brazil and without having anyone who knew the disease well enough to guide us, my doctors were lost as to how to help me and how to proceed. Once I found my doctor, things began to change and we began investigating my disease and eventually one piece of the puzzle was found after another.
It was around this time, a few months prior to my open heart surgery, that I had mentioned to Deborah that I hoped one day to begin a forum for Portuguese speaking people. I had learned so much and I found that in gaining comprehension of the disease, in gaining more control over it, so many of the fears and anxiety which I faced were magically disappearing. It was like a Ozma's magic wand waved over my head and I was clicking my heals and returning home to Kansas after a nightmare trip. I felt burdened that there was nowhere for Brazilians especially, but those patients who only speak Portuguese to run to, to find help, to find comfort and knowledge!!! I wanted to do something about this. But I realized that it wasn't yet time. I came to the place of speaking with Dr. Escribano, asking his opinion if he thought a Portuguese site was needed and he gave me a resounding YES LISA!! But I still had a lot to learn about how to sucessfully monitor a site, in keeping it focused and well balanced and this is what I have learned here.
Some of you may have seen me over in other sites. I have not considered them "Home" for in being in those others sites I found that I was not protected, that the discussions quickly broke down into arguments and even attacks - That the information was often not reliable, or that it got way off track and out of focus of what was the real subject, that of a MC disorder and learning how to live with it. I also found that there was this strange competition amongst the members as to a type of pecking order as to who was sickest, or who had the rarest disease, or who could affirm their opinion to being the only opinion the loudest. I also found places where the patients had these attitudes that they knew more than the major researchers and that their attitude was that of how in the world did the researchers get along without them and their dabbling in medicine and science - and that they were going to be the ones who found the final answers, as though research could not go on without them and their groundbreaking discussions as to what the truth of the matter really was! I have considered this forum home since 2009 when Deborah welcomed me with open arms and a warm heart and allowed me to grow. She was gracious with me when she had to give me a "Mom talk" and was supportive when I was going through challenges of my own. Without this forum and the tremendous support and friendship I have found with her and the other moderators here, I would not now be able to step out and begin helping the many other patients that we have here in Brazil and the doctors in founding a Mastocytosis Reference Center. Thank you my dear friend for giving me the support you have given - the MCDForum has its place in the roots of the work I am now able to begin in Brazil!
So, If you wonder "where" I am, I'm where I've always been, in Brazil. However, please do not think that I am gone permanently from this forum, for this is not the case. I am overwhelmed right now with trying to get this work up and running. It's no small task I've been asked to do, but I have stopped in here from time to time and will continue to do so for this is my home, yet any time I am needed I am more than happy to step in and give my support. I am also more than happy to try to answer questions or help anyone who wished to PM me. I am not gone, I am only busy trying to give the desperately needed support that we enjoy so much here. I am only busy making a home for other parents with children and patients who have not a single place to go to find answers and support.
Lisa
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