This year for Pain News Network I am working on a Rare Disease series. I have been writing for PNN, going on 7 years now. I felt compelled to write about rare conditions specifically this year.
Some I know about have family or personal friends who live with these conditions. Others I am learning about for the first time.
With over 7,000 rare diseases and limited treatments, being difficult to diagnose, and not having spotlights shine as bring on them for society, it felt like a perfect fit. I love with multiple rare diseases myself so this has a special place in my heart. So for the rest of the year, I will continue to update this particular blog and you will see it jump up to the top of the blog page so that you can learn along with me to be introduced to 12 rare diseases.
2021 Rare Disease Series
January – Paget’s Disease
February – Alexander Disease
March – X-Linked Hypophosphatemia
April – Cauda Equina Syndrome
May – Vulvodynia
June – Dupuytren’s Contractures
July – Transverse Myelitis
Aug – Friedreich’s Ataxia
Sept – Sarcoidosis
Oct – Asplenia
Nov – Coccidioidomycosis
Drop me a comment to let me know which one was most fascinating to you, connected with you.
My hope for all those living with a rare condition (or more than one) is that a cure will be found someday. In the meantime, we can do our part to help lower stigma about rare conditions by advocating for research and meaningful support for the millions of people who live with them.
Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.
