rare disease day 2024: 'my lifelong dream of becoming a mother finally came true'
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"pulmonary arterial hypertension (pah) is a lethal disease and there is a huge need for new treatments," says jane sernoskie, who was diagnosed with pah at age 26.
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imagine waking up one day and being told you have a rare and incurable disease. now imagine being told that this condition may not only take your life, but also prevent you from realizing your dream of becoming a mother.
this was my reality back in 2016 when i was diagnosed with pulmonary arterial hypertension (pah) at the age of 26. pah makes it difficult for blood to pass through the arteries in the lungs. as it progresses, it can weaken the heart and lead to complications, including heart failure. left untreated, pah may result in death in two to three years after diagnosis. people with my condition are advised against giving birth due to the inherent risks for both mother and baby.
while this is a lot to take in for any person, let alone someone in their twenties, my story is one of hope and perseverance. i have a lot to be thankful for.
for one, i found out i have pah earlier than most people do. it all began when i started having trouble breathing. i was getting winded a lot more than i used to while playing hockey. at the time, i wrote it off as exercise-induced asthma, but then it kept getting worse. even little things, like carrying groceries or picking up toys up from the floor in my job as a kindergarten teacher would cause me to be short of breath. something was clearly off, but it wasn’t alarming enough for me to rush to a doctor’s office. it was at my mother’s insistence that i finally got it checked out and was given the diagnosis of pah.
i was given the gift of a speedy diagnosis and would like to pay it forward by raising awareness about rare conditions through advocacy work. i strongly encourage others who face health issues to get them checked out right away. keep advocating for your health, ask for help and don’t stop searching for answers — your body will thank you for it in the long run.
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secondly, my lifelong dream of becoming a mother finally came true. after years of being on a wait-list to adopt a child, my husband and i decided to explore surrogacy. thanks to the team at the ottawa fertility centre and a surrogate we found through facebook, my husband and i had our first child in 2022.
finally, i am alive today thanks to the expert care provided by my medical team and the love and support from my family and friends. i had to fight for access to treatments that weren’t yet funded by the government formulary, but eventually, thanks to ontario’s exceptional access program, i am on several treatments that have helped slow down the progression of my disease.
but pah is a lethal disease and there is a huge need for new treatments. earlier diagnosis and timely access to new therapies are key to delaying disease progression and reducing hospitalizations. i know i am not alone in these challenges — there are more than three million canadians living with rare conditions, many of whom are also fighting for their lives.
this is why, on rare disease day, i am joining the canadian organization for rare disorders (cord) and other rare disease advocates across the country in calling for action from the federal and provincial governments to move forward on rare disease strategies and funding to ensure that today’s and tomorrow’s rare disease medicines are made quickly available to canadians. patient lives are on the line, and we can’t be patient any longer.
i urge you to join us. together, we can make a difference for the millions of canadians living with rare diseases and their families. visit www.fightforourlives.ca to support this campaign.
jane sernoskie is a rare disease patient advocate and kindergarten teacher.
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