APFED, the American Partnership for Eosinophilic Disorders, https://apfed.org/ and the Allergy & Asthma Network https://allergyasthmanetwork.org/ have developed a terrific starter kit for those who have recently been diagnosed with eosinophilic asthma, commonly known as eos-asthma or e-asthma. Wish it had been around three years ago, but hey — at least it’s available now.
Available at https://eosasthma.org/ it explains about the diagnosis and how e-asthma differs from the more common types of asthma, how treatments may vary, and how to find specialists with experience in treating the diseases.
Also included is information on the research on new treatments, and even tips on how to obtain assistance affording the most expensive medications, and advice for parents about working with their children’s schools.
As someone who has at times struggled to explain my diagnoses (and all that led up to finally getting the diagnosis — 20+ years of misdiagnoses and medical errors) to family and friends (and a part of why I started this blog/website), I am thrilled that my friends at APFED (a wonderful organization that is a tremendous source of information, assistance and referrals) have committed to this.
If you, or someone you know, has been told you have eosinophilic asthma (and I understand how hard it is to learn to pronounce that, much less understand what it is — why do you think we call it “eos” or “e”?) — start with this eos-asthma.org https://eosasthma.org/ website (and this one, I hope).
And send me a comment or question. I’ll do my best to help!
