Hi Huck Friends! February is Marfan Awareness Month and for the next couple of weeks we will be
sharing personal stories from some of our friends that are either living with Marfan Syndrome or raising a child with Marfan! We are so excited to share these stories with you and hope that you will find some good resources and support from them.
Marfan Syndrome is a genetic disorder affecting the body's connective tissue. If not caught, it can be deadly. We are so thankful for our February guest writers that are willing to share their story with us.
MEET SAMANTHA MALONE. She is a 32 year old Marfan Patient with 2 children who do not carry the Marfan gene defect.
Tell us how you discovered you have special needs?
I was diagnosed at the age of 2. My mother took me to my well baby check and my doctor heard a murmur. He sent me to Nationwide Children’s Hospital. It was there that I received my diagnosis.
What things have you found to enjoy about having Marfan Syndrome?
Honestly, for a very long time it was hard for me to put the word “joy” and Marfan syndrome in the same sentence. I was angry. It wasn’t until my thirties I began to accept myself for who I am. I find joy in helping others understand this disorder. I use to write for a major blog and various other publications about Marfan. Writing about my disorder brought me tremendous healing and joy. I no longer write as much as I use too. It was a tool that helped me work past my own shortcomings, but the joy I have found is helping with things like this. If I can help one Marfan patient feel not so alone, then that is what brings me true joy.
What have you learned about yourself?
Being the patient with a disorder, I let Marfan define who I was. I wasn’t anything but a person with a disorder. I have grown into my own, and discovered that Marfan Syndrome doesn’t define, its just a small strand in the fabric of my life.
Do you ever feel overwhelmed?
No, this disorder (speaking as a patient) is not that bad. Even as a child it wasn’t overwhelming. It was normal to me.
How can others support you?
By trying to understand the disorder and not assuming you know what is good for a Marfan patient.
What are your strengths? What do you enjoy doing?
My strengths are compassion and I also have a fantastic sense of humor. LOL. Obviously you learn a great deal about compassion with a lifelong disorder, and if you don’t find things funny, it makes it harder to get through the hard times. I enjoy…...being a mom to a 3yo and 7 yo boys, I pretty much just enjoy naps at this point in my life.
What kind of struggles do you have because of your special needs?
As a child the hardest thing to deal with was bullies at school. They knew I looked different and was different. The horrendous names, tortured for being different, and every day wondering why I was wrong in their eyes.
What concerns do you have for your future?
The concern I have for myself are medical expenses. I have insurance, but it is still a struggle at times.
Tell me a little about your family/children.
I am married, and have been for 11 years. We have 2 boys.
What message would you like to share with other families that are new to the special needs community? Reach out and get to know the people in support groups. You will need them to help you emotionally tackle this disorder.
How important has a diagnosis been in getting the right care?
It is everything.
How helpful has a support group been to you (if one is available)?
Why is "awareness" important to you?
Because this disorder can be deadly if it is not caught.
If you have any questions for Samantha please feel free to reach out to her via email at firstname.lastname@example.org!