Steve's Sunset
Thanks to our partnership with Amgen Rare Disease, we collaborated with Cystinosis Warrior Steve Schleuder to create this special card. Steve was great to work with and we found his authenticity endearing and relatable to all of our illness warriors.
The front features a vibrant sunset design that is perfect for any encouraging sentiment or life event. The back of the card has Steve’s photo, a bit about him, and a QR code to learn more.
These cards will be sent with hand-written messages throughout the rest of the year and first priority will be given to those living with Cystinosis, Urea Cyclical Disorder, and Thyroid Eye Disease.
Cystinosis is a rare genetic condition that causes an amino acid called cystine to accumulate in your cells. An excess of cystine in your cells can cause crystals to form that build up and then cause problems in your organs. Cystinosis most often affects your kidneys and eyes.
Meet the artist
Steve
Steve is a 36 year old Cystinosis warrior who shared:
When I am doing physically well, I really enjoy being outside in nature and walking by beautiful scenery. This was the inspiration for this card.
I guess the main thing I want to share is I can get very angry with my body and my life circumstances when things don't work the way I'd like them too. I feel like a human Yo-Yo sometimes because I will go through weeks (sometimes even months) of great health days when I can pretty much interact with my world in the way most able-bodied Individuals can.
Then there will be random times when my illness effects everything in my life and I have bad days when all I can do is rest in bed all day. I'm blessed because I always cycle back into my good health days. However, the back and forth cycle I go through can be exhausting.
I have excellent long-term friendships which helps a lot. They are a great comfort to me, and I don't know what I'd do without them.
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