Brittany’s Story


Being part of a research study for pulmonary hypertension not only helped me to see the connection between hormonal fluctuations and my physical symptoms, it allowed for my medical team to discover that I had a serious hormonal imbalance leading to early menopause and the removal of my ovaries at age 27.

During my participation in a study looking at the connections with hormones and pulmonary hypertension symptoms, my hormonal levels were monitored on a weekly basis, and I did a pulmonary function test, six-minute walk test with oxygen levels being monitored, and had an ultrasound of the heart.

Doctors found that my hormonal levels throughout the menstrual cycle were alarmingly low and that my ovary was not functioning as it should for a 26-year-old woman. If it weren’t for this study, I wouldn’t have the knowledge that I did about my hormone levels throughout the month.

I learned more about my body, the impact that hormone health has on my symptom management, and my doctors looked further into the cause of my ovarian failure, which eventually prompted a surgery and complete hysterectomy at age 28.

Studies are invaluable, and my particular study helped to pinpoint other contributing factors related to my worsening symptoms.

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Michael’s Story

A chat with Michael Morale, SMA advocate Marcella: Michael, can you talk about your experience with SMA clinical trials? Michael: Back in 1998, after officially receiving my diagnosis of spinal muscular atrophy (SMA) type 3, my neurologist asked me if I would be...

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Brad’s Story

Clinical Trials for the Rarest: Worth the Head Scratching Clinical trials are hard to come by when one has a rare disease, doubly so when that person has a rare form of that rare disease, and triply so when deemed ineligible due to severe health complications. That...

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Kevin’s Story

Expanding Clinical Trial Access for Adults with SMA In 2017, I began a journey that was both exhilarating and terrifying. Toward the end of the previous year, the first treatment approved by the U.S. Food and Drug Administration for my disease became available. Called...

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