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Meet Scleroderma Warriors
SCLERODERMA STORIES
Our Scleroderma Stories publication tells the journeys of scleroderma warriors around the world. In Scleroderma Stories, patients share their hardships, triumphs, passions, and more. This initiative seeks to help patients realize that they are not alone and that they can live incredibly rich lives, even with a chronic illness.
One of my goals in life has always been to help people. When I got diagnosed, I thought that all just went away. I always thought that goal was just gone. But when this whole pandemic started, I decided to open my own YouTube channel, “Alejandra Warrior.” I just decided to start recording things that I have been through in the past so people don’t make the same mistakes that I did.
– Alejandra (California, USA), Issue 3
I spent years allowing this disease to own me. I wanted so desperately to live life and enjoy my family, but I didn’t know how to do that while living with chronic pain. I felt like a burden… After seeing a life coach for a while and really putting in the work, I started setting goals: writing again (something I love) and getting into healthier habits such as working out, eating clean, and just taking a more holistic approach to my disease and life. I got my life coaching certification, and I became more involved with advocacy regarding this disease.
– Silvia (Toronto, Canada), Issue 1
I actually played college basketball and did some track. Then, scleroderma took that away. But I was able to find a hobby – a sport still – such as skiing and table tennis to still get a sense of activity, recreation, and such… It’s like if you were a pianist, and then you were able to do another instrument. It may not be the same, but you’re still able to make noise.
– Erion (Oregon, USA), Issue 3
I still struggle at times to come to terms with this disease… Being honest about how you are doing is important. There is no use in telling your family that you are fine when you are not. They need you to constantly keep them informed in order to be able to help you.
– Tracey (Eastern Cape, South Africa), Issue 1
After many tests, the doctors concluded that I had diffuse scleroderma. That took me by surprise. I was upset and mad; eventually, I accepted the fact that I had this. Life goes on, and I live each day as it’s thrown to me… You can either try to live with it or let it control you. Some days may be hard, but it’s important to stay strong and have a positive mind.
– Tonya (Newfoundland, Canada), Issue 1
Before my diagnosis, I had never heard of scleroderma. I was 12 at the time. After I got diagnosed, I thought, “wow, what will happen down the road?” I met other kids with scleroderma at the KidsGetScleroderma2 conference. When I met them, I felt like I finally had friends that knew how I felt. They make me feel better.
– Jessie (Pennsylvania, USA), Issue 2
I had depression and anxiety – a breakdown. But eight years ago, I had a life-changing moment… I returned to working out and won a modeling contest five years ago. I became a body painted model at 49 years old and have done many shows since then. I model often for print.
– Sandra (Florida, USA), Issue 1
Before, I was really low on myself and felt as if I was never going to be great or never going to conquer my goals… But now, with time, that mentality has changed. I just tell myself every day, “Just because you have scleroderma doesn’t mean you can’t do what people without it do.” If you put your mind to it, you will get through it and make it happen, even if it takes a slower or different way to make it happen. I know I CAN and will make it happen!
– Keanna (New York, USA), Issue 2
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LEARN CENTER
Scleroderma United has developed its Learn Center as a hub for information about scleroderma, its symptoms, and related conditions. The Learn Center is intended as a resource to encourage and facilitate learning about scleroderma.
