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DINET member name: Katie Haynes Katie's hometown: Youngsville, NC Diagnosis: POTS, EDS, MCAS, AMPS (Amplified Musculoskeletal Pain Syndrome), IBS, Alopecia Photography: https://www.facebook.com/KatieHaynesPhotography/ Smiling While Sending Hope: https://www.facebook.com/Smiling-While-Sending-Hope-561096004224670/ VOG project: https://www.facebook.com/pg/Smiling-While-Sending-Hope-561096004224670/photos/?tab=album&album_id=563489880651949 Cambridge Mask project: https://www.facebook.com/pg/Smiling-While-Sending-Hope-561096004224670/photos/?tab=album&album_id=589899214677682 In Katie's words... A little bit about me: I’m 18 years old and I have POTS, EDS Type 3 and MCAS.and a few other illnesses. I love photography and started my own photography business. I also love sports, shooting, hunting, showing rabbits, crabbing and graphic design. But my mission in life is to help other people. Helping others has been a big mission my whole life, even before getting sick, to make an impact on people’s lives. I believe I do that by organizing toy drives, making comfort packages for local children’s hospitals, making awareness videos and my VOG and Cambridge Mask projects. Making an impact on others lives is what I love to do. I believe that this mission will continue to grow and continue to help many others in the near future! Katie’s joy….. I love to bring joy to kids and teens faces and make them feel at ease while they face big obstacles in their lives whether that be chemo, a transplant, or some other health challenges. I have done this project of toy drives on my own now for about 5 years. I also have sponsored local families in need of certain items. Along with that, in December of 2017, I launched a project where I send comfort packages and masks to people fighting chronic illness. I also created a facebook page to help grow my project in January of 2018. I also give out packages and/or masks to the teens that I meet in the area and at the hospitals. This is my main long-term goal; to grow this and make it bigger each year. I find people’s stories that speak to me and share them in groups that I’m a part of. And I send masks or packages to as many people as possible. Due to cost, I keep the packages that I give out mostly local, but I have mailed many masks and will continue to do so as funding allows. I also keep it local because I like to meet each of the warriors in person and spend some time with them. What inspires Katie….. I was inspired to start this to get involved about 7 years ago when Paxton, a little boy at my church, passed away. Not long after his passing, I helped with a toy drive called "Presents for Paxton" for UNC Hospital. A few years later, I went camping and met a girl named Skyla Rippy who has a rare blood disorder called Diamond Black-Fan Anemia. We got to know each other very well, and now we are very good friends. When I found out that she was receiving care at hospital local to me, I started going with her to her appointments and began to do research on childhood illnesses/cancer. I then started workshops and presentations to share with others about what I had learned. I also became friends with kids I would meet at the hospital on social media and in real life.
Hi everyone, Wanted to share that with the help of my cyber friends on DINET and the Mast Cell Disorders, I have just been diagnosed with MCAS as the trigger of my sympathetic overdrive, orthostatic issues and autonomic neuropathy. When I first read about MCAD on here, I didn't think it applied to me, even though several of you sent me messages or posted that I should really look into mast cell disorders. I already had dealth with multiple chemical sensitivity, multiple food and drug allergies, and anaphylaxis, but those symptoms seemed to have been settled with my previous treatments (which interestingly involved several drugs used for a typical MCAS regimen). I have learned a few things that may help you sort out the mast cell information out there. I did not know that the clinical diagnosis of anaphylaxis doesn't have to involve tongue swelling or breathing issues!! For example, there are 4 levels of anaphylaxis and my episodes involving: skin (such as flushing, hives, or rash that comes and goes) GI - evacuative, sudden "D" and vomiting Cardiac - orthostatic or low BP meets that diagnosis. Well this just opened up my word!! I have now been able to find a bunch of new triggers and explain that most of the meds I can't tolerate are mast cell degranulators! This means I have been poisoning myself for years. If you have trouble with antibiotics (especially penicilin, sulfa, levaquin, cipro,, vancomycin, etc), codeine, opioids (morphine, hydrocodone, etc), NSAIDS (ibuprofen, Aleve), skin anesthetics (lidocaine, marcaine, etc), other sulfa meds, like migriaine triptans, topamax, diuretics (lasix, hydrochorothizide), muscle relaxers contrast medium (x ray dye) adenosine then you may want to look into mast cell disorders as a potential cause of your POTS or other autonomic dysfunction. I urge anyone with unexplained reactions to anything from fricture, pressure, heat, cold, water, foods, meds, perfumes, hormones, and changes in barometric pressure to consider misbehavin' mast cells as the cuplrit. Check out the many great discusisons on here to learn more. Best Wishes and thanks for sharing your stories. Lyn