Joey was diagnosed in October 2018 with multicentric Castleman disease (TAFRO syndrome). At first they were relieved since they were bracing for news that Joey had cancer, but then once they learned more about the disease and how much is still unknown about it, they almost started to feel that cancer would have been easier since there is a clear treatment path and people have been cured of cancer (or at least can say they are cancer-free).

When Joey was diagnosed, a team of doctors at Children’s Hospital of Philadelphia diagnosed him. None of them were fluent with this disease, however. Before Joey, it had been 2-3 years that a child was diagnosed with CD there. However, the doctors reached out to the CDCN’s Dr. David Fajgenbaum for assistance with the diagnosis (he came over to CHOP and looked at Joey’s tissue under the microscope and helped them determine that it was CD) and used his treatment guidelines that were published only a few weeks earlier.

Joey was hospitalized for close to three months. He was very sick with kidney injury, enlarged spleen and liver, fevers, and massive amount of fluid retention in his abdomen. He was unable to get out of bed without help and could hardly walk more than a couple steps before becoming incredibly fatigued. He went from a super star soccer player in great shape, to a bed-ridden teenager with no endurance and deteriorating muscles as a result of this disease. He also suffered several rare complications after being diagnosed including PRES (extreme high blood pressure that caused a prolonged seizure which temporarily impacted his mental capacity and caused hallucinations and visual impairment) and a severe allergic reaction to tocilizimab during his 4th infusion. However, he overcame these setbacks and now that he is no longer flaring from the disease, he is getting back to his old self. Joey continues to see the same rheumatologist that was part of the team that diagnosed him.

We were so lucky and fortunate that the CDCN found us. Because Joey’s doctors asked for help in diagnosing, we were introduced to members of the CDCN team within one hour of being told the diagnosis. This meant so much to us! We were able to ask questions from the experts as we came to terms with what this disease was and what it meant for Joey’s life. The CDCN continues to be a source of information, hope and comfort for us. The CDCN has been a valuable resource for us to learn about Joey’s disease. But more than that, it has given us hope for his future. Reading through the literature about this disease can be overwhelming as the stats are not good. However, knowing that Dr. Fajgenbaum has experienced exactly the same symptoms as Joey and is doing so well after 5-6 years, gives us tremendous hope! Joey says that he looks at him and sees a healthy and successful man who has the exact same kind of CD as he has and it makes him feel better about what his life will look like. In addition to the information and hope, the CDCN has connected us with other families who have loved ones with CD, especially other parents with kids who have CD. We have been supported by these families and now are in a position to give support to newly diagnosed families, which is a rewarding opportunity. In addition, the CDCN’s research is so important to understanding this disease and finding a cure. They are the only organization that we know of committed to this disease and that means the world to us.

We joined this fight because of what this disease did to Joey. We don’t want other families to have to feel the pain that we went through and are still going through every day as we fight this disease. We don’t want Joey to have to endure another flare or live his life with a suppressed immune system, always worried about what virus he might catch and not be able to fight. We want to help the CDCN find a cure so he can live a normal life. We want that for him and for all the patients and loved ones of patients who have been impacted by this disease.

Although there is a lot to learn about this disease, there is so much more known now than 5 or 10 years ago. And with the CDCN’s help, there will continue to be more and more information about CD in the years to come. Get involved with the CDCN, give samples, help fundraise and build awareness. And know that by doing so, you are making a difference in the lives of so many patients and their family members.

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