2017 Stepping Out - Nebraska (Heartland Chapter)

Team Latka

Thank you for visiting my Team Fundraising page to support the "Stepping Out to Cure Scleroderma" event!

Donating through this site is simple, fast and totally secure. It is also the most efficient way to make a contribution to support my team’s effort to raise funds for people living with scleroderma. To make a donation, click on one of the team members to make a gift towards their fundraising effort to help our team.

If you would like to join our team at the event, and walk and help raise funds, please click on “Join My Team” and follow the directions.

Please help today! Our team sincerely appreciates your support, and we ask you to please share this with anyone who you think might want to help.

Help our team bring more awareness to scleroderma so we can find a cure!

My story.... 

2017 …. Now about 5 years after my diagnosis for Systemic Diffuse Scleroderma and 3 and a half years after my stem cell transplant. This disease still affects me daily. It may not be noticeable to someone else, but I am reminded everyday that my body is limited because of Scleroderma and will not ever be back to my “normal” self.
I am grateful for the changes that have happened since my transplant. I am grateful for all of the people that have supported me through my journey. I do believe I would not be here today if I had not had the transplant. It gave me so much of my life back and I would not want to change that.
I am reaching out again because even though the transplant was able to help me, it is not a cure for Scleroderma. Everyday people research to find a cure. My body can reverse itself at any time. I am able to feel like an independent person again, but I still can not pick up a piece of paper if it falls on the floor, get dressed with out a device that assists me, need assistance at a store, or look at a hill and say I can climb it. Stairs continue to challenge me along with sitting in a chair with no arms. When I walk in to a new room I have to evaluate where I can go and sit on my own, but at the same time I say this, I can walk into a room independently and be on my own.
There are so many positives to me having a transplant, but the fact still remains there is no cure and not everyone with Scleroderma can have a transplant. Scleroderma is a little known disease that kills many people. I know several that this disease has taken over their body.
The definition of Systemic Diffuse Scleroderma is a chronic skin disease that the symptoms can be treated, but do not go away. It is an autoimmune disease causing your body to make too much of the collagen causing skin thickening. As a result the skin gets thick and tight with scars forming on the lungs, kidneys, and blood vessels. This leads to tissue damage and high blood pressure.
Diffuse Scleroderma comes on quickly with thickening skin on the middle part of the body, thighs, upper arms, hands, and feet. This form also affects the internal organs like the heart, lungs, kidneys, and gastrointestinal tract.
So …. as most of you know Scleroderma affected me quickly and my only option was an autologous (my own stemmies) stem cell transplant. Today, I am able to update my story because of the transplant. I do believe if I had not tried experimental treatment I would not be writing my story to send you today.
Please consider joining my team, making a donation, or donating an item. Any little bit helps.

 

 

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