There are over 10,000 rare disorders and diseases, the majority of which do not have a Patient Advocacy Organization (PAO) representing them! Read how the MdDS Foundation is advocating for you, today on the blog.
Eleven years ago, Sylvia Hemby’s joyful vacation in Hawaii turned into a challenging experience due to her diagnosis of Mal de Débarquement Syndrome (MdDS). The disorder caused a persistent sense of rocking. Yet, she found solace in creating seashell art, channeling her struggles into beauty and resilience, representing her journey of growth.
Summit Recap: Over the course of the two-day event (actually 3 days, including pre-summit meetings), I met many other Patient Advocacy Organizations with shared challenges and successes.
Exciting news you can use! This edition is filled with important information that you definitely want to read.
“I hope to help people understand how debilitating MdDS is and how frustrating it is to look fine on the outside but silently suffer.” ~Dawn #thestruggleisreal
For some, MdDS is a cloak of darkness that settles over them. But Dawn McGhee is helping people who struggle like herself, to find light in the darkness.
For eight years, Rocking Candles has been explaining to others what daily life is like for MdDS sufferers. Kate, owner and MdDS warrior herself, has also been giving back through donations to support research so we can all “get off that boat.” Read to learn more about Kate and her custom candles.
Did you know? MdDS can be triggered by an event that doesn’t involve travel. Here is an unusual case, in a word: jishin-yoi Read & Learn!