2017 Stepping Out Buffalo NY (Tri-State Chapter)

Mandy's Sclero Slayers

Welcome to Mandy's Sclero Slayers!!

I am 31 years old, and was diagnosed in 2009, but started symptoms in 2007, 6 months after my daughter was born. It started off very difficult, trying to adjust mentally and physically with the understanding that this disease will forever be ME now. Depression, anger, you name it. After several years of letting Scleroderma win over my mental state, while fighting the physical ailments, I decided to embrace who I am now, and help others not be afraid, and to be confident and knowledgeable. I joined my first walk in 2015.

Scleroderma has affected my life greatly. From military, fireman, plahing violin, piano, and guitar, and running regularly, I have had to stop ALL of that, because Scleroderma wouldnt let me. I have since developed new passions that accomodate the parts of my body that have been effected. As of right now, my stomach and rest of my gut has been impacted. Lack of circulation in my intestines slows digestion causing food to take over 24 hours to digest atart to finish. I have already had stomach surgeries to correct the Messantirac Artery that was constricting down on my intestines. I also have severe scar tissue on my heart because of Scleroderma, causing chest pains on almost a daily basis. The more the heart works, the more the heart pulls at the muscles and connective tissue around my heart causing the actual pain in my chest. This also causes for me to have a low ejection fracture. My hands can no longer make fists or hold change without it falling out. They hurt ona daily basis, and I end up with finger ulcers occasionaly because of lack of blood flow and circulation. My face has been effected as well. From being able to swallow and needing my throat dilated, to the skin and tissue around my mouth to tighten loosing the fullness of my lips and a tight smile. The skin and tissue over my nose also has become so tight that every bone in my nose can be seen through the thin layer of skin that covers it. Because the skin is too tight and stretched so thin, it has become difficult to breath through my nose, painful when touched or pulled, and always red because the vessels are so surfaced. I have also started slight skin discoloration as well on my face and legs. 

Each dollar counts in the fight against Scleroderma. Some day, the infusion I recieve every 6 montha, may stop working. There is nothing else out there for me to try, that we havent already and has had negative effects. Help me research better medications, and help me have hope that I will be able to keep going many years to come. Help me believe that someday there will be a cure to Scleroderma. That my suffering, and the suffering of others was not for nothing!

Thank you for being apart of Mandy's Scero Slayers and thank you for making a donation towards my team! Together we can SLAY SCLERO!!!!!

 

 

 

Thank you for visiting my team page. Donating through this site is simple, fast and totally secure. It is also the most efficient way to make a contribution to support us and help raise funds for scleroderma patients.  Just click the button on the left “Support ‘My Team Name’ ” and follow the steps.

If you would like to walk and help raise funds click on “Join ‘My Team’ ” and select “I want to attend the event and register” button and follow directions.  There are many pages of help in the Help tab.

Over 50% of all of the Tri-State Chapter’s funding for research, education and support programs is raised by walk donors and walkers – please help today.  Many thanks for your support -- and don't forget to forward this to anyone who you think might want to help.

Help us in the fight to bring awareness and a cure to this horrible disease.

If you would like more information about scleroderma or the Tri-State Chapter please see the link below.

THANK YOU!

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If you would like more information about scleroderma or the Tri-State Chapter, please go to www.SclerodermaTriState.org.

 

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