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.

Read More

Charlene’s Story

Next month is the five-year anniversary of when I first heard the words “idiopathic pulmonary fibrosis.” I was diagnosed by a pulmonologist at a local respiratory care center, where I’d finally been referred after 13 months of dealing with persistent shortness of...

read more

Dagmar’s Story

“Have you ever participated in clinical trials?” That’s a common question among ALS patients. What’s my standard answer? “It’s complicated. I’m participating in several studies, but even though I’d like to, I haven’t been in any clinical trials. I’m excluded because...

read more

Jenn’s Story

Living with a progressive and incurable disease is a lesson in accepting the unacceptable. With change being the only certainty, I have learned to appreciate the beautiful fragility of life.  It has been 11 years and three disease-modifying therapies since my...

read more