Hi Linda - I was wondering if you had heard of the Courageous Parents Network, which is a non profit supporting families of seriously ill children from diagnosis to any decision making required afterwards. My dear friend Blyth Lord started it a few years ago - she lost her beautiful daughter at age 2 to Tay-Sachs. It's a free online resource for families to access and connect with other families facing similar challenges. They've used her videos in training nurses and doctors who don't get to hear the voices of families in this unique situation. They are connected with Global Genes and Rare Disease Network, but I thought this might be something of interest for some members of our group. She's Boston based and very well respected by both children's hospital and mass general for children. She's addressing the needs of families with children under 18 right now, not adults. The psychologist in several of the videos actually counsels Luc, and she has helped his anxiety and fear so much and I'm in awe at what she does (she's in Lexington, Ma). So Blyth and I have had several eerie coincidences and crossed paths - too many for me to ignore. Our family does not need the support of the group, since Luc is thriving and has no special needs outside of his infusion and therapy, but maybe this would be helpful to those who are not near a large city or who may not be comfortable with a group setting or even seeing a therapist.
I helped Blyth with an event and I was blown away by her work and the women who work along side her and I thought of you and your story. She's trying to get her help out to more people. Please have a look and let me know what you think. This is by no means a request for money or help, everything is free. Blyth just wants to get her message out to those who need support. Courageousparentsnetwork.org
I really would love to speak w/you tonight or tomorrow if you are available. I have learned a little bit about your already from Bill & Cheryl. Thank you in advance - I love this group just like everyone effected by aHUS does!!!
Thank you for the welcome Linda. My wife is stable thanks to Soliris infusions. Her chronic illnesses, prior to being diagnosed as having aHUS, were frustrating for us to say the least. At least we are on a stable path now
Thank you Linda . Yes we are in touch with Mr. kamal shah .Here,aHUS foundation INDIA expressed their inability for financial help. Also, I wanted to ask if needed can we send our sons reports to the panel of doctors for their comments or also get a clear path for future like precautions etc.. Regards , Aurobinda Bose
Thanks for checking in! I'm continuing to do well and feel stronger, planning to return to work on Wednesday. I think I'll appreciate a little more structure in my day, but I know I'll miss all the free time!
Linda, Thank you for allowing to join this group. What a blessing this has been to feel the start of a connection. Going back to work after this new diagnosis has been challenging. We live in bloomongton, IL and would love to connect with others in the area.
Thankyou Linda . Yes we will get in touch with Mr. kamal shah . Also, I wanted to ask if needed can we send our daughters reports to the panel of doctors for their comments or also get a clear path for future like precautions etc..
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The Atypical HUS Foundation encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.
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Did you know...
CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
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It is estimated that there are about 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
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