I interviewed a member of a support group for people who have the disease. Here's our exchange!
1. What is one thing we could do to raise awareness about Marfan Syndrome?
- To be honest any way you can raise awareness is the way to go, the best thing that can happen to a patient is early diagnosis, so if people are aware of the disease and get checked it could very well save lives.
2. What type of Support does your group provide to people who have been diagnosed with the disease?
- We bring people who have Marfan's together, that way they have people to talk to that are going through the same thing. We also try our best to give our support to them in anyway possible, whatever it may be.
3. On average, how much does treatment cost per month? Is this covered by insurance?
- It depends on how severely the individual is affected. Up until it gets more severe it costs the same as any other normal person. Once surgery comes into the picture, well then it depends on how much insurance coverage they have. But other than major surgery, the main additional cost of maintaining an individual would be for medication.
4. Do all patients experience the same symptoms, or does it vary depending on the person?
- It all depends on the type you have, different people with different types experience different symptoms.
5. How are you involved in the support group?
- I am actually new to the support group, but so far I've just been helping out in different ways. I hope to get more involved soon though.