Walking 2000 miles (3218 kilometers) for Sjogren's Syndrome
Lolly, my mom, died at 81 in 2010 after living with Sjogren's Syndrome(SS) for over 20 years. She was beautiful, warm, and gentle but strong because she had to be to raise 8 kids. In the early 90's she developed several symptoms including; severe fatigue and dry mouth and various lung issues. Doctors kept misdiagnosing her illness for over 5 years and they just kept prescribing drugs. It became apparent that she was overmedicated and getting off all the drugs helped but she was not diagnosed correctly until 1997 after visiting the Mayo Clinic. After that her body deteriorated rapidly. For the last 10 years of her life her weight hovered between 63 and 80 lbs.. SS attacks the autoimmune system and targeted her lungs She had COPD, emphysema, repeated pneumonia and bronchitis, staph infections, etc.. Despite all this my mother's mind was incredible. She remembered everything. Also, if you asked her about her illness or anything about her she would change the subject and ask about you. I never once heard her complain. She was always positive; wanting to get her weight up or get stronger to attend a family function. She was one of the most courageous people I have ever known.
Watching my mother struggle with misdiagnosing of Sjogren's Syndrome(SS) and dealing with overmedication and then seeing her physically deteriorate was sad. But seeing how she dealt with it in her quiet dignified way, makes me want to honor her. She was always giving to others and I have learned that Sjogren's Syndrome is a horrible disease. The fact that it impacts people, 90% women, differently makes it difficult to diagnose.
The Sjogren's Syndrome Foundation is working to fund research to find a cure but also to increase awareness with the public and doctors to reduce the amount of time it takes to diagnose SS.
So in my Mom's honor and to raise awareness of Sjogren's Syndrome I am going to walk 2000 miles (3218 kilometers) starting this April. The first 800 miles will be in Ireland on the E8 trail between Dublin and Kerry and various day hikes. On July 23, World Sjogren's Syndrome Day, I will depart from St. James Gate at the Guinness Factory in Dublin and make my way by train, ship and train to Le Puy, France to begin a 1200 mile (1931 kilometer) pilgrimage on the La Compestela de Santiago "The Camino". From Le Puy 736 kilometers to St. John Pied de Port. Another 910 kilometers on the Camino Frances to Santiago, Finnisterre and Muxia. Then backwards on the Portuguese Camino to somewhere between Porto and Lisbon. I hope to complete the walk around mid October.
Along the way I will spread the word about Sjogren's Syndrome to anyone that will listen. You can follow my travels at:
Thank you for visiting my fundraising page.
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Many thanks for your support.