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Connecting with the Community

For many years, histiocytosis was thought to only or primarily affect children. Over the years, more adults have been diagnosed with histiocytic disorders which has changed how the Histiocytosis Association and those in the medical community support patients. The most commonly occurring in adults are, Langerhans cell histiocytosis (LCH), Erdheim-Chester Disease (ECD), and Rosai Dorfman Disease (RDD); adults are also diagnosed with hemophagocytic lymphohistiocytosis (HLH), Xanthogranuloma (XG/JXG), histiocytic sarcoma, and malignant histiocytosis. Over the past 18 months that I have been in this role, I have started to connect with more adults and have had an opportunity to learn what challenges they face which will shape our programs in the future.

We strive to support all patients and families across all histiocytic disorders with as many forms of support, as many resources, and through funding research for the most promising projects. As the needs of the community evolve, we aim to evolve our work to mirror the most urgent and important matters. This is why your engagement and feedback is so profound for us and we appreciate hearing everyone’s voice!

In late July, I was fortune to have the opportunity to meet several of you who were diagnosed with histiocytosis as adults. You’ve allowed me the chance to hear your experience, to learn from you, and to better understand the challenges you face before and after diagnosis. I learned how scary the information is online when you google your diagnosis. I now better understand how difficult it was for you to receive an accurate diagnosis for the symptoms you were experiencing and how relieved you were to finally know what all of the pain, fatigue, and sickness is caused by. I have a strong sense of how important connecting with others who have the same diagnosis is for you, and how much those who you have connected with have impacted your life and given you hope. I also had the opportunity to get to know your families and hear how histiocytosis has impacted them as well. Everything I have learned has been truly helpful and has our wheels turning on some additional resources and programs we can provide.

I want to say thank you to those of you who reach out and share your journey with us. Thank you for helping us to better understand your day to day experiences and how we might be able to help. I encourage you to reach out to us as we are here for you and would love to connect – no matter when you were diagnosed, no matter what questions you have, we want to hear from you. We also hope to be able to host many more family meetings in 2022 where we can connect you with local physicians and experts in histiocytosis as well as other warriors and their loved ones. Let us know where we should visit next! Reach out to me to share your story!