Today I had my annual cardiology appointment. I do not go to your typical cardiology clinic, but one located at a local children's hospital. At the age of two it was discovered that I had a heart murmur and sent to this same hospital. I was then diagnosed with Marfan Syndrome and seen there throughout my childhood. Thirty … Continue reading I’m 32, and I still see a doctor at a children’s hospital.
Tag: Rare disease
Six Gift Ideas For The Person With Marfan Syndrome.
With the holidays just around the corner, and the stresses of finding that perfect gift to give, I decided to do a post for a special group people. When you have a rare disorder like Marfan syndrome your days can be complicated, and painful. Life can be made slightly uncomplicated with certain products that many Marfan … Continue reading Six Gift Ideas For The Person With Marfan Syndrome.
When Isaiah Austin Decided To Play Basketball Again…..
In the past few days some big news has developed in the Marfan Syndrome world. One of the Marfan Foundation representatives decided to continue his dream of becoming a professional basketball player. Isaiah Austin had big dreams of becoming an NBA superstar, but those dreams were cut short when it was discovered that he has … Continue reading When Isaiah Austin Decided To Play Basketball Again…..
This is What Chronic Pain Looks Like
This is a picture of me at urgent care. I am in my scrubs because I just got off work. I got mistaken for a nurse by a doctor who was wanting to know where the lab is located. I had no clue because I am not a nurse in this facility. He had … Continue reading This is What Chronic Pain Looks Like
Why I may decline the invite.
When you have a chronic illness you sometimes have to pick and choose what activities you can do. Even though we may want to say yes to every little event we are asked to, we know sometimes we just have to say no. It's not that we want to decline. It really is a matter … Continue reading Why I may decline the invite.
What to say to a person that is newly diagnosed with a rare disorder.
I was diagnosed with my rare illness at 2. I was lucky to be diagnosed at such a young age. First and foremost, it probably saved my life, but it also saved me from knowing what life was like before a diagnosis. To me, Marfan syndrome was always known. I can’t remember a day I … Continue reading What to say to a person that is newly diagnosed with a rare disorder.
How did you make lemonade?
Here at Basket of Lemons we are always looking for guest authors. Our goal is to share how we make the best in any situation. Taking the lemons life gives you and make lemonade. Topics: Medical disorders- chronic illness, genetic disorders, rare disease, awareness to a specific condition Parenting Life If you would like to … Continue reading How did you make lemonade?