Rare Sisters- We welcome you to our conversation of pain, envy, supporting each other and finding joy during the more difficult times. What it takes to support a friend or relative with chronic pain.
EPISODE HIGHLIGHTS
Can you share about your rare disease journey?
I have a connective tissue disorder called Ehlers-Danlos syndromeIt is an inherited condition that affects the connective tissue of the body. Connective tissues are responsible for structuring and supporting the skin, blood vessels, bones and organs. Connective tis and a lot of other diagnoses fall under the umbrella of the disease, such as celiac disease, POTSIt is a form of orthostatic intolerance. Symptoms of the condition occur upon standing up from a reclining position. The primary symptom of the intolerance is lightheadedness, fainting and an uncomfor and allergies. I had multiple mis-diagnoses from the time I was young before I was officially diagnosed with Ehlers-Danlos syndrome. When I was younger, I was always getting hurt and always in pain and I thought it was normal. I would even dislocate joints and I never said anything. I had a lot of symptoms of Ehlers-Danlos syndrome that I wasn’t aware of.
How much did your rare disease impact your decision to adopt?
My husband and I have always discussed adopting, but having chronic health issues definitely played a part in our decision. It was scary to think about passing something along to a child. So many things can happen in a pregnancy and we had to consider the additional risks associated with having multiple health concerns and the effects that medications may have, or what medications I may have to change or quit taking and how that would affect me. There are so many ways to have children if you have health concerns.
How are you balancing rare disease and motherhood?
I have been a teacher for 13 years and my most recent job was an hour from my home. I love teaching, but it got too difficult to make the commute and it was affecting my ability to do my job as well as I wanted and my personal life and the things I could do on the weekends. I was also sick constantly. I found an opportunity to teach from home and I do that full time now. I’m fortunate to have the opportunity and I’m so glad that it worked out. Right after I started my current job is when we found out our daughter was going to be placed with us with little notice, so it worked out well. It has made everything a lot more manageable.
