Episode 486 - Scott E. Olitsky, MD
I'm Aware That I'm Rare: the phaware® podcast
Release Date: 09/16/2024
Wendy Mercado - phaware® interview 592
I'm Aware That I'm Rare: the phaware® podcast
A Mom of Three, a Hidden Killer, and the Specialist Who Saved Her Balancing life as a full-time teacher, wife, and mother of three, PAH patient, Wendy Mercado, put herself last until her body forced her to stop. After years of bouncing between doctors and medications, a PH specialist finally sat down, drew her heart on paper, and said the words Wendy needed to hear: We’re in this together. That moment didn’t just change her treatment plan, it changed her future. My name is Wendy. I am from Long Island, New York. I was diagnosed in July of 2010, after my pregnancy with my twins. It was...
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Episode 592 - Wendy Mercado
I'm Aware That I'm Rare: the phaware® podcast
A Mom of Three, a Hidden Killer, and the Specialist Who Saved Her Balancing life as a full-time teacher, wife, and mother of three, PAH patient, Wendy Mercado, put herself last until her body forced her to stop. After years of bouncing between doctors and medications, a PH specialist finally sat down, drew her heart on paper, and said the words Wendy needed to hear: We’re in this together. That moment didn’t just change her treatment plan, it changed her future. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware ...
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Jenn Lalonde - phaware® interview 591
I'm Aware That I'm Rare: the phaware® podcast
23 Years of Survival and Still Fighting the Darkness No One Sees Surviving a rare disease isn’t always heroic. Sometimes it’s depression, isolation, and wondering if you’re even “sick enough” to deserve the label anymore. Canadian pulmonary hypertension patient, Jenn Lalonde, battles imposter syndrome on her good days and crushing heaviness on the bad ones. Because even when your body stabilizes, your mind doesn’t always follow. My name is Jenn Lalonde from Ontario, Canada, Northern Ontario, about four hours north of Toronto. I see Dr. Sanjay Mehta in London. I travel six hours...
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Episode 591 - Jenn Lalonde
I'm Aware That I'm Rare: the phaware® podcast
23 Years of Survival and Still Fighting the Darkness No One Sees Surviving a rare disease isn’t always heroic. Sometimes it’s depression, isolation, and wondering if you’re even “sick enough” to deserve the label anymore. Canadian pulmonary hypertension patient, Jenn Lalonde, battles imposter syndrome on her good days and crushing heaviness on the bad ones. Because even when your body stabilizes, your mind doesn’t always follow. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware Share your story: Like,...
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Lynn Bouseman - phaware® interview 590
I'm Aware That I'm Rare: the phaware® podcast
“Get Your Affairs in Order”: She Told Her Doctor She’d Be Back in 20 Years In 1994, before there were any FDA approved treatments for pulmonary hypertension, Lynn Bouseman was told to prepare for the end. Her pressures were sky-high. Her heart was failing. A specialist calmly suggested she might only have months. Lynn looked him in the eye and said, “No,” she had two small daughters waiting at home. Survival would require one thing above all else: a refusal to surrender. My name is Lynn Bouseman. I am from Southern Illinois. I was diagnosed with pulmonary hypertension in 1994. My...
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Episode 590 - Lynn Bouseman
I'm Aware That I'm Rare: the phaware® podcast
“Get Your Affairs in Order”: She Told Her Doctor She’d Be Back in 20 Years In 1994, before there were any FDA approved treatments for pulmonary hypertension, Lynn Bouseman was told to prepare for the end. Her pressures were sky-high. Her heart was failing. A specialist calmly suggested she might only have months. Lynn looked him in the eye and said, “No,” she had two small daughters waiting at home. Survival would require one thing above all else: a refusal to surrender. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a...
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Abby and Ari Borstein - phaware® interview 589
I'm Aware That I'm Rare: the phaware® podcast
PH Didn't Just Change One Life, It Changed an Entire Family When pulmonary hypertension changed their father, Eric Borstein’s life, sisters Abby and Ari refused to let the disease write the ending. Instead, their family turned heartbreak into hope by creating a community " 5K dedicated to raising awareness, honoring their dad, and supporting others facing the same rare disease. What began as one family's response to unimaginable adversity has grown into something much bigger, a movement proving that every step taken can bring hope to someone still searching for answers. Learn more about...
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Episode 589 - Abby and Ari Borstein
I'm Aware That I'm Rare: the phaware® podcast
PH Didn't Just Change One Life, It Changed an Entire Family When pulmonary hypertension changed their father, Eric Borstein’s life, sisters Abby and Ari refused to let the disease write the ending. Instead, their family turned heartbreak into hope by creating a community " 5K dedicated to raising awareness, honoring their dad, and supporting others facing the same rare disease. What began as one family's response to unimaginable adversity has grown into something much bigger, a movement proving that every step taken can bring hope to someone still searching for answers. Learn more about...
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Donna Wallace Harmon - phaware® interview 588
I'm Aware That I'm Rare: the phaware® podcast
She Didn’t Just Survive Being Rare. She Made Meaning Out of It. PH patient, Donna Wallace Harmon can’t fly. She lives with limits. She knows tomorrow isn’t guaranteed. But Donna refuses to live waiting for “someday.” Her motto is simple and defiant: Do the best I can when I can, because nobody knows what tomorrow holds. My name is Donna Wallace Harmon. I was born in Jamaica, but I came to Canada in my early 20s. When I was born, I was a preemie with a VSD, a hole in my heart, but it wasn't repaired until 1990, because they didn't think it necessary at the time. As I grow older and...
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Episode 588 - Donna Wallace Harmon
I'm Aware That I'm Rare: the phaware® podcast
She Didn’t Just Survive Being Rare. She Made Meaning Out of It. PH patient, Donna Wallace Harmon can’t fly. She lives with limits. She knows tomorrow isn’t guaranteed. But Donna refuses to live waiting for “someday.” Her motto is simple and defiant: Do the best I can when I can, because nobody knows what tomorrow holds. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware Share your story: Like, Subscribe and Follow us: .
info_outlineIn this episode, Dr. Scott Olitsky, the Global Center of Excellence Outreach Director for Cure HHT, discusses hereditary hemorrhagic telangiectasia (HHT), a genetic disease characterized by abnormal blood vessel development. HHT can cause bleeding in various parts of the body, with nosebleeds being the most common symptom. In some cases, HHT can lead to the development of pulmonary arterial hypertension (PAH). Medications that dilate blood vessels can worsen bleeding in HHT patients. Dr. Olitsky shares his personal connection to HHT and PAH and highlights the efforts of Cure HHT to improve diagnosis and treatment options for patients.
Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware
Engage for a cure: www.phaware.global/donate #phaware
Share your story: info@phaware.com @curehht