Photo courtesy of Kayla Marie Day 11 of 30 This is Kayla Marie’s (@itskayyyla) story: My name is Kayla. I’m 26 with a 4-year-old daughter, and I’m about to get married this December. I was diagnosed with pulmonary arterial hypertension (PAH) by a heart cath on…
Photo courtesy of Lisa Chapman Day 10 of 30 This is Lisa Chapman’s (@Lisa_Chizzapman) story: My name is Lisa Chapman, and I am a “PHighter.” I have been sick since May 11, 2019. I have been my own biggest advocate since then — with no other choice but…
Photo courtesy of Roxanne Giustini Day 9 of 30 This is Roxanne Giustini’s (@steelergirlrock) story: I was diagnosed with idiopathic pulmonary arterial hypertension (IPAH) in January 2016. This was not my first experience with a strange new disease. In 2002, after a year of terrible symptoms and…
Photo courtesy of Zyana Perez Day 8 of 30 This is Zyana Perez’s (@zyanaperez) story: For years, our family of three wanted to expand to four. We never could decide the “right time” to have a new baby. Between moving, finishing college, and many other things, we figured…
Photo courtesy of Lauryn Durham Day 7 of 30 This is Lauryn Durham’s (@_misslauryn) story: In the words of Beyonce in her song “Feeling Myself,” my world both literally and figuratively stopped, but I have continued to carry on. I was diagnosed with idiopathic pulmonary arterial hypertension…
Photo courtesy of Terra Carter Day 6 of 30 This is Terra Carter’s (@Realslimmshadey) story: My twin sister was diagnosed with idiopathic pulmonary arterial hypertension (IPAH) more than 10 years ago. I was tested and showed no signs of having it. I lived a normal life, exercising,…
Photo courtesy of Katie Sample Day 5 of 30 This is Katie Sample’s (@katiecomansample) story: My story begins with my husband, Bruce, who was a cancer survivor. Bruce unexpectedly passed away on April 13, 2018. We had been together for nearly 10 years. We were both attorneys (I…
Photo courtesy of Terry Meehan Day 4 of 30 This is Terry Meehan’s story: Australia has a population of around 34 million kangaroos, 30 million drop bears, 26 million humans, 1.4 million wild horses and camels, and around 250,000 crocodiles. Nah, I exaggerated the number of drop bears…
Photo courtesy of Aya Hashiguchi Clark Day 3 of 30 This is Aya Hashiguchi Clark’s (@dukesbay_productions) story: Voice of the stage manager: “Places!” Lights dim on the audience. Lights up on the stage. The play begins. This was a big part of my life before I became a…
Photo courtesy of Sally Hoffman Day 2 of 30 This is Sally Hoffman’s story: I dedicate this to my mother who has always been a great inspiration to me. When I was 6 years old, I had a third-degree burn on my right leg. I remember waking up in…
Photo courtesy of Carol Volckmann Day 1 of 30 This is Carol Volckmann’s story: Trusting your gut, which is crucial with any disease, is more than just being your own advocate. I have learned how important it is to not only trust your instincts, but to do your research.
Global Genes has partnered with the Rare Disease Diversity Coalition (RDDC) to advance health equity for rare disease patients and caregivers in underrepresented communities of color. “For rare disease patients, there are many challenges — and for people of color with a rare disease, these challenges are compounded…
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