Support My Battle with Scleroderma

Hello everyone!! ❤️

The cause of scleroderma is unknown. A buildup of a substance called collagen in the skin and other organs leads to the symptoms of the disease. The disease most often affects people ages 30 to 50 years. Women get scleroderma more often than men.

While growing up, I’ve always been very healthy and active. If I got sick, it would last a couple of days. I didn’t do any sports when I was little, but I did play basketball in middle school. I was always smiling and laughing. I love making others laugh!

In the summer of 2019, my first symptoms were knee pain. I didn’t pay much attention till everything changed in December of 2019. I was in my room sitting on the ground doing homework. I got up, and while I did, I had a sharp pain in both of my knees. I stood halfway up and tried to straighten my knees and couldn’t. I never had a pain like that before. It would happen a lot if I sat for a long period of time or when I stood.

Fast forward to 2019-2024, during the cold weather, my hands and feet would turn purple/white. My hands and feet feel a burning/cold numbing sensation. It would last for minutes or hours. If I have to pick which is worse, I would say my feet.

In December of 2019, I went to a small hospital since my knees and hands had been causing me pain on a daily basis! I was told by a doctor, “You should exercise more.” In the summer of 2022, I went to a different hospital, and thankfully, they took action. I did many tests. Sad to say, it was a small hospital, but I had amazing doctors and nurses! I was then referred to University of Iowa Hospitals and Clinics in Iowa City. I did a lot of testing (many blood draws, CTs, MRIs, breathing tests, X-rays, and many more). I even had surgery to check if my organs were good since my skin was so tight, especially on my chest. It was a 3+ hour drive, very exhausting since I was the driver.

I was prescribed medication Mycophenolate Mofetil (CellCept). It’s to slow down the condition/doesn't get “into” my organs. I was prescribed 1 big pill in the morning and 1 at night. A couple of months went by and no improvement. Doctors then prescribed 2 pills in the morning and 2 at night. A couple of months went by and no improvement. My doctors were debating if I should take 3 pills in the morning and 3 at night, which I did (pills were high doses). I had terrible side effects. By then, I was in my 1st year of college. It was a challenge, and thankfully, I graduated!!

In January of 2023, I decided to stop taking my medication. I felt so much better, and in the summer of 2023, I called my doctors saying I no longer want to go to the hospital. She eventually agreed. In October 2023, my doctor called me saying I should go back. I told her, “I’m sorry, but I’m not going back. It’s exhausting driving and having a lot of appointments in a day, and I’m tired of getting poked.” She agreed. We talked about my health, but she told me terrible news and said, “You have 5-10 years left to live.” I accepted it and moved on.

Fast forward to 2024, my symptoms have been over the roof! My Raynaud’s has been worse in my feet. It gets to the point where I can barely walk. The numbness and cold/hot feeling have been worse. My breathing has never been an issue till now. It gets to the point where I have to catch my breath for a few seconds! My mobility in my wrists and hands has been getting worse!

Even though my symptoms have been worse, my family and I decided to go back to the hospital at Mayo Clinic. I’m not 100% happy, but for now, it’s for the best! Right now, I’m living life to the fullest with my family and completing my bucket list! ❤️

Most medications aren’t good for me, it can slow down the process and remember there’s no cure! Right now I’m not taking any medication I will have to use a “Bio Arterial Pump” (The Bio Arterial Plus is a non-invasive arterial enhancement system that’s clinically proven to increase arterial blood

flow, promote wound healing, and reduce pain and discomfort associated with Peripheral Arterial Disease (PAD). I’ve been told that I will have to use that pump for the rest of my life. My cheapest option is rent to own which will cost $2,000 thankfully I can go payments.

By donating to my gofund me YOU are helping me with hotel stays, gas, bucket list and my pump!

As the years go by, I’ve realized that my time is limited. In October of 2025 it’s down to 3-8 years. I have a bucket list that I would love to complete. My lists includes skydiving to living out of the country.