Happy Last Day of August! As we get ready for the autumn, we want to highlight four articles. We have an article about the Zebra Ball fundraising for EDS advocacy,…
Hello there! My name is Amy. My friends call me Miss Amy. I’m 42 years old and I have a 21-year-old son who also shares the same diagnosis as me.…
On August 4th, the Ehlers-Danlos Society led the Zebra Strong Rally, which concluded the third day of the Ehlers-Danlos Syndrome Learning Conference in Baltimore, Maryland. Advocating for Ehlers-Danlos Syndrome The…
I came into the hospital about four days ago at 6 am in extreme abdominal pain. I remember writhing on the emergency room bed and breathing so frantically that my…
Living with PKD has been a constant struggle for me but for you to better understand my story, I’m going to start from the beginning when I was first diagnosed.…
Happy Back 2 School Time! As the week comes to a close, we want to spotlight four articles. We have an honest piece from PW contributors Denise Crompton and Tom…
According to a story reported by The New York Times, on Christmas Day, a physician and mom of two became too weak and fatigued to do much of anything. Her…
This article contains a summary of the first episode of Afflicted A new series on Netflix called Afflicted explores chronic illness. It follows seven people as they talk about their…
Erika Baker and her family have been dealing with the impact of adrenoleukodystrophy (ALD) for generations. The disease has impacted several of her family members, including her uncle, her cousins,…
Recently, the Ehlers-Danlos Society held its second annual Zebra Ball at the EDS World Learning Conference in Baltimore, Maryland. The event fundraised for further support and awareness of Ehlers-Danlos syndrome…
According to a story from Business Wire, the biopharmaceutical company Onspira Therapeutics recently announced that its investigational therapy OSP-101 was recently granted Orphan Drug designation by the US Food and…
If you or someone you know has ADPKD, email us at [email protected]. We'd love to hear from you about your experience! What is PKD and ADPKD? PKD (polycystic kidney disease)…
The Beginning My story began in February 2011. On January 10th, 2011, my husband and I were involved in an accident in which we slid off the side of a bridge 10 feet face…
In January-March of 2015, I was the healthiest I’d ever been... or so I thought. I worked out, drank plenty of water, had a great lifestyle and meal plan. In…
At the 2018 Aplastic Anemia and MDS International Foundation’s (AAMDSIF) International Bone Marrow Failure Disease Scientific Symposium of March 2018, Dr. David Margolis from the Medical College of Wisconsin, and…
In an article by the Fibrous Dysplasia Foundation, the brief and wondrous life of Mauricio Saravia is remembered and celebrated on the advent of his mother’s memoir publication. Mauricio,…
These groundbreaking research results have been published on the website of the University in Erlangen and in the New England Journal of Medicine, and I would like to share them…
A Phase 1/2 clinical trial of the experimental drug NV1205 in patients with childhood cerebral adrenoleukodystrophy (CCALD) has been initiated, announced NeuroVia Inc. The source article can be found here,…
PTEN Hamartoma Tumor Syndrome (PHTS) What is PTEN Hamartoma Tumor Syndrome (PHTS)? PTEN hamartoma tumor syndrome (PHTS) is an umbrella term referring to a spectrum of conditions that are all…
To read parts 1 and 2 of Maxine's dysautonomia journey, click here and here. It was a complete scope of my upper gastro track and everything went well with the…
Is there a genetic condition in your family? Are you concerned about the potential for passing this on to your children one day? Do you know if you are a…
Check out part 1 of Maxine's dysautonomia story here. The ambulance took me to the hospital, where they not only started an IV but also began giving me blood. I…
This is the first installment of a three part dysautonomia story. “Every woman has a moment in life that changes everything. What’s that moment for you?” I read this question…
The documentary The Bleeding Edge has just been made available on Netflix in the US and UK (27th July 2018). Described by Netflix as “controversial”, the documentary explores the impact…
Happy End-of-July! As the week comes to a close, we want to spotlight four articles. We have an honest piece from PW contributor, Tom Seaman. Next, we investigate the root…
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