17-years-old and living with pulmonary hypertension

healthing spoke to 17-year-old brin marks who was diagnosed with ph in january 2020, and her mother and primary caregiver jessie marks to learn more about this rare disease.

how did you find out you had ph?

brin: i was in grade 10 gym class running super hard and i couldn’t keep up. i remember trying to walk to the soccer goal post so i could lean up against it. there was ringing in my ears, and everything just went black. i was told i was out for about five minutes.

jessie: brin was brought to the hospital and initially diagnosed with a heart condition and then two days later we were told the diagnosis was actually severe pulmonary arterial hypertension. it turns out brin has a mutated gene that caused the disease to rear its ugly head.

brin marks pictured with wes cullum and her service dog gus. supplied

what does your day-to-day life look like?

brin: i wear oxygen all the time and take many medications. i can’t have junk food because a high intake of sodium makes my feet, hands, face, and ankles very puffy. walking up and down the stairs is a struggle for me and i can’t walk very far without being short of breath, so i use a wheelchair for longer distances. regulating temperature is tough for me–even if i take a shower with the door closed, i get lightheaded which could cause me to collapse. i also go to the clinic every six to eight weeks for tests.

jessie: the day i got the phone call that brin collapsed was the last day i worked. one of brin’s symptoms is that she’s prone to collapsing, so she can’t be left alone. her and i have basically been attached at the hip for the last two and a half years.

what will transitioning from pediatric to adult care look like for brin?

jessie: we were nervous at first because we’re so comfortable with the medical team she has. but there’s going to be a new ph clinic for adults opening up at the university of alberta so that’s great news. brin has already started to slowly transition away from pediatric care, and we’re excited to be part of something new.

“when brin was first diagnosed with pulmonary hypertension, we were told she likely wouldn’t live to see 17,” said jessie marks, brin’s mother. supplied

what do you wish people knew about ph?

brin: i wish people were less judgemental because a lot of the time ph is an invisible disease — if i wasn’t on oxygen, you wouldn’t know i had a medical condition. i think everything happens for a reason and in a way this disease has been a blessing in disguise because i’ve been able to educate a lot of people, and hopefully my experience will teach people to be grateful for what they have, even the small things.

what are some of your interests and what are you looking forward to?

brin: art is a big passion of mine — i love to sketch and paint. i am also a big reader and i love going for walks with my service dog gus and my mom and dad. i’m home-schooled right now so i’m going to take a year off after graduation and then take some post-secondary art classes, and really dig into volunteering with the pulmonary hypertension association of canada .

jessie: when brin was first diagnosed with ph, we were told she likely wouldn’t live to see 17. she’ll be graduating from high school in a couple of weeks, so seeing her walk across that stage is going to be amazing.

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17-years-old and living with pulmonary hypertension

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