Meet Sarah Houston, a mother of four and the Chronic Care Management Nurse at one of Kentuckycare’s family medical care clinics in Paducah, Kentucky. After Sarah had her fourth child, she started to notice some unusual changes that led her to see her physician for a checkup. That doctors visit changed everything—learn how her post-surgical symptoms led to an unexpected diagnosis, and why World Rare Disease Day means so much to her now.
How did you first become aware of your rare disease?
On January 9, 2013 I gave birth to my fourth child via C-section. I was to return to the obgyn for follow up in one week. During that week I noticed that I had started to swell very badly, but I just assumed it was from surgery.
On January 16, I went to my OB/GYN and was explaining some of my symptoms because I assumed I had come down with bronchitis—I was short of breath and couldn’t lay down completely flat without having trouble breathing.
By this time, I had gained 26 pounds in fluid. My obgyn started to explain this rare heart condition that happens in pregnant women or post-partum women. I was then told I needed to see a cardiologist as soon as possible. I saw a cardiologist the next day, where I had an echo cardiogram and was diagnosed with peripartum cardiomyopathy.
How does peripartum cardiomyopathy affect your life?
Usually, this Illness will go away after a year or so of treatment, however there is a small percent chance that you will be effected for the rest of your life. I am that small percent.
I currently take daily medications to control my heart rate and blood pressure and my fluid retention. Along with medications I also have to maintain a cardiac healthy diet. So this is something that I deal with daily.
What does World Rare Disease Day do to help raise awareness about the specific disease that you are close to?
I truly believe that the best way to help people who could potentially be affected by a rare disease is to educate people and show others they are not alone in this battle.
How can people help support those with rare diseases throughout the year, not just on this special day?
One way to support this is to understand that disease effects everyone, it does not discriminate against age or race or gender.
What would you like the general public to know about rare diseases, and specifically about peripartum cardiomyopathy?
My biggest issue is that I want people to just ask and never assume. If you have a question, just ask. I would rather teach you or answer questions than assumptions be made.
At KentuckyCare, we echo what Sarah says about asking questions and understanding rare disease—we want you to see that anyone can be affected by rare disease. We encourage you to look around at your community and learn how you can help support those who have a rare diagnosis like Sarah’s. And, as always, have regular checkups and make an appointment if you notice that something doesn’t feel quite right. You can make an appointment with our skilled team of primary care providers by calling (877) 791-9154.