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Oct 9, 2024 | 
porphyrianews.com | Andrea Lobo |Marisa Wexler |Mary Chapman |Kristen Wheeden
The United Porphyrias Association (UPA) has received a five-year grant from the Chan Zuckerberg Initiative Rare As One Project to support efforts including advancing progress on the diagnosis, research, and treatment of porphyria.
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Jun 26, 2024 | 
porphyrianews.com | Lindsey Shapiro |Kristen Wheeden |Mary Chapman
A European Medicines Agency (EMA) committee has recommended that Scenesse (afamelanotide) be designated an orphan drug for the treatment of light sensitivity in people with variegate porphyria (VP). The implantable medication by Clinuvel is approved in the U.S. and European Union (EU) to treat people with erythropoietic protoporphyria (EPP) who have a history of toxic reactions to sunlight. It is not approved in these regions for VP, but Clinuvel is working to expand Scenesse’s indication.
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May 21, 2024 | 
ankylosingspondylitisnews.com | Lindsey Shapiro |Steve Bryson |Mary Chapman |Alexandra Fendrich
For the first year after my diagnosis, I dreamed almost nightly of my healthier self. In the depths of rapid eye movement sleep, I was sprinting across the soccer field, jogging down the paved roads of Central Park in New York, even shuffling my seventh-grade students through the subway as we rushed to make it to their basketball game across town.
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May 8, 2024 | 
porphyrianews.com | Marisa Wexler |Kristen Wheeden |Mary Chapman
For this year’s Global Porphyria Day on May 18, supporters are encouraged to wear purple, decorate their homes in purple, and take to social media using the hashtag #PurpleforPorphyria to raise awareness about porphyria and share their stories.
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Apr 30, 2024 | 
porphyrianews.com | Kristen Wheeden |Marisa Wexler |Mary Chapman |Margarida Maia
Because my son Brady grew up with erythropoietic protoporphyria (EPP), a rare condition that causes extreme sensitivity to sunlight, finding a safe space where he could just be a kid meant everything to me. EPP means that even brief exposure to sunlight can cause severe pain, making typical childhood activities risky endeavors. A saving grace came in the form of a special “night camp” designed for children like Brady.
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Apr 24, 2024 | 
porphyrianews.com | Mary Chapman |Margarida Maia |Kristen Wheeden |Lindsey Shapiro
The United Porphyrias Association (UPA) and the nonprofit advocacy organization Shadow Jumpers are teaming up to give 20 U.S. children with sun sensitivity conditions, along with their families, a safe and special camp experience this May. The event, dubbed Sun Escape Weekend, will allow these children, ages 6-16, the opportunity to be together with other kids with similar medical conditions, and to enjoy a variety of activities at a camp experience created for youths who are sun sensitive.
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Feb 5, 2024 | 
cushingsdiseasenews.com | Noura Costany |Paris Dancy |Mary Chapman |Hawken Miller
It took me two years to get diagnosed with Cushing’s disease. I suffered as I moved from doctor to doctor, begging them to figure out what was wrong with me. I was tested for (PCOS), , thyroid issues, and cervical cancer. I had to quit my job to focus exclusively on obtaining a diagnosis. I endured countless blood tests, MRIs, and hospital visits as I visited multiple primary care physicians, gynecologists, endocrinologists, and other specialists. When I finally learned what I had, I wept.
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Jan 18, 2024 | 
friedreichsataxianews.com | Kendall Harvey |Mary Chapman |Steve Bryson |Patricia Inacio
As we approached the end of 2023, I didn’t feel like myself. I was overwhelmed by most things in my life, and I constantly felt inadequate. That made it easy for me to retreat, curse my circumstances, cancel plans, and spread my bad mood like a plague. I’d been functioning in a frenzy that just wasn’t sustainable. I’d poured too much of myself out without replenishing life back into me.
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Dec 6, 2023 | 
fapnewstoday.com | Ezekiel Lim |Lindsey Shapiro |Mary Chapman
Holiday travel reminds my family just how important a wheelchair-accessible van is for transporting my mother-in-law, who has familial amyloid polyneuropathy. It can be difficult for neuropathy patients and their caregivers to be home all the time, and traveling may be necessary to keep the holiday spirit alive. Families might consider obtaining a modified vehicle to transport their loved one.
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Nov 17, 2023 | 
myastheniagravisnews.com | Mark Harrington |Shawna Barnes |Marisa Wexler |Mary Chapman
My earliest school memories revolve around reading class. I couldn’t wait until after lunch, when we’d get out our books and take turns reading. I loved Dick and Jane, Sally, Mother, Father, and of course, Spot. I began a love affair with the written word that continues to grow today. My family members hint that perhaps I should let this love affair cool a bit. Two years ago, I spent four months in Maine. I arrived with two books and left with 52. When a book catches my imagination, I must have it.
