Fundraiser to Support Research into Stevens Johnson Syndrome
We live in fear of a recurrence and unfortunately Ella had one last spring. She was admitted to Rady's Children's Hospital in San Diego. We knew it was a great hospital as we had researched it before we decided to move to San Diego, but we were still nervous as Ella had received such excellent care at Lurie's. That is when Dr. Eichenfield walked into our lives. He came into the hospital room, examined Ella and talked to us extensively about the state of the research on SJS and related illness. He knew about research studies all over the country and the latest treatment options off the top of his head. He even knew about specific cases in other parts of the country -- I had connected with the mother of a child in Denver who had SJS on an online support group and he actually started telling me about that child's case! It was amazing. He also informed us that, since Ella had first been diagnosed with SJS, the medical community had started to recognize an illness separate but closely related to SJS called MIRM and that Ella's symptoms were much more consistent with that illness. That was both good and bad news; good because the newly recognized illness appears to be somewhat less severe, but bad because it can be triggered by any type of infection, even the common cold.
After our first meeting with Dr. Eichenfield, we knew we were in good hands and that we couldn't have picked a better doctor for Ella if we had tried. Dr. Eichenfield is Chief of Pediatric and Adolescent Dermatology at Rady Children‘s Hospital-San Diego, and a Professor at the USCD School of Medicine. He has been named one of the "Best Doctors in America" since 1994. He is the past president of the Society for Pediatric Dermatology, has served on the Board of the American Academy of Dermatology. He is the Editor-in-Chief of Pediatric Dermatology and serves on the editorial boards of multiple journals and periodicals. He is also a founder and Co-Chair of the Pediatric Dermatology Research Alliance.
Since first meeting Dr. Eichenfield last March, Ella has had another recurrence of this illness and another false alarm. Dr. Eichenfield has shepherded us through both and helped Ella to avoid another hospitalization. Despite his busy schedule and the fact that he literally lectures all over the world, Dr. Eichenfield usually calls within minutes of receiving emails from us about Ella. His level of care is truly astonishing and we are forever grateful for his expertise and attention. Because of his obvious expertise in this area, we have decided to raise money for his research team at Rady's so they can work to collect more data about SJS and related illnesses in the hopes of finding the cause and cure for these horrible illnesses.
We would be beyond grateful for any donation of any amount. We know there are many worthy causes out there, but this one is near and dear to our heart. Your donations will be tax deductible and will go to MIRM/SJS Resarch through Dermatology at Rady Children’s Hospital-San Diego.
Nicole, Matt, Ella and Lainey
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