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Q&A with Alexis Schwei
Alexis is in 9th grade and her mother Cathy has been living with scleroderma for the past five years. They attend the National Conference as much as possible to learn more about the disease and to connect with others battling it. It's become a highlight for their family and Alexis encourages all families who deal with scleroderma to attend!
Tell me about the conference you went to last year…
I went to the National Conference in July, and I attended the juvenile part. I got to go to workshops and learn a lot.
Why did you want to go?
There is so much to learn and I wanted to see some of my friends that I met in Texas in 2012. You meet a lot of new people and make a lot of new friends when you go to the conferences.
What is the hardest thing about having a mom with scleroderma?
Seeing her suffer and not being able to do things we used to be able to do. We she is sick, it’s hard to leave and go to school where I can’t help her. We can’t always go out and do things when she isn’t feeling well. I really miss having her come to my games, going shopping together and playing sports with me.
After going to the conference, do you feel like you understand more of what your mom is going through now?
Yes, I understand a lot more of it now. Sometimes she doesn’t look like she’s sick, but I learned that it isn’t about how she looks. I can’t tell, only she know when she isn’t feeling well. I also thought it was only adults that could have the disease, but I met a lot of kids who have it too. We now have a 6-year-old in our support group at home and I was able to come back and tell her about what I learned.
Do you think other kids should go?
It is a great experience and I recommend that everyone should go who is able. People are so nice there and welcoming, even if you don’t know them. The connections you make and what you learn is encouraging. It makes me want to help people who have the disease and want to make more people aware about it.
Did you meet other kids who had parents living with scleroderma?
Yes, and other kids who have it Now, we Snapchat and text. Hearing them talk about how they feel and what they are going through, I feel like I know what to say to them because I understand.
Why will you continue to go to these conferences?
Because I learned what I can do to help my mom get through and how I can support her. It’s encouraging to know I’m not the only one feeling this way about scleroderma and to see how other people are going through it.
This article originally appeared in the Summer 2015 issue of "Scleroderma Voice." Become a Scleroderma Foundation member today to receive four issues per year.