#nfdf

3rd treatment today since i restarted a few weeks ago. Coming to see Trudi for my infusion feels like the easiest they have ever been for me. The Emory infusion center is super convenient to get to from my house and other than them having to order the medicine (having to be mixed and delivered) from a third party everything is super quick and easy here, they also could get better wifi but it is what is is.

My man Rick from Knoxville will be 58 tomorrow. Such a cool guy, and the most friendly. Love seeing others with fabry living happy healthy lives.

I CAME ACROSS THIS STORY TONIGHT & ALL I HAVE TO SAY IS WOW. TAKE THE TIME AND CHECK OUT THIS GUYS JOURNEY. LET'S HELP HIM REACH HIS GOAL. SERIOUSLY AN AMAZING STORY. CHECK OUT The Fabrys Walkabout My name is Courtnay Midkiff.  I am 23 years old and I suffer from an illness called Fabry Disease. What is Fabry Disease (Fabrys)? Fabrys is a very rare genetic disorder found in only 1 in 40,000-to-60,000 males. Classified as a Lysosomal Storage disease, Fabrys is a defect in a gene that causes a deficient quantity of an enzyme. This enzyme is necessary for the daily breakdown of a lipid (fatty substance) in the body. When proper metabolism of this lipid does not occur, it accumulates in the majority of cells throughout the body. The resulting progressive lipid accumulation leads to cell damage, which causes a wide array of symptoms. These symptoms range from the inability to sweat, stomach problems, fatigue and chronic pain in the fingers and toes, to severe symptoms, including potentially life-threatening impacts such as kidney failure, heart attacks and strokes (which my brother, who also suffers from Fabrys, experienced in November, 2011, at the age of 26). On March 1st, 2013 I will embark on a backpacking trip from coast-to-coast. I am taking this on with the sole purpose of raising awareness of this little known and chronic disease, and hope to raise $1,000,000 to support a great organization that helps people like me, The National Fabrys Disease Foundation (“NFDF”). CHECK OUT THE REST OF HIS STORY AND DONATE !  http://www.firstgiving.com/fundraiser/fabryswalkabout/fabryswalkabout

Today was very overcast most of the morning, and at about 430 the rain really started coming down. As I walked down 268 west in the rain a truck pulled over and a very nice man Chuck and his son Jordan wasted no time in offering me a ride to there house where I could have a dry place to rest for the night. They helped me get my cart in and out of the truck and put me up in the attic of the garage they are building behind there home. It's dry and out of the weather and its almost like being in a tree fort. Chuck told me his wife isn't home yet and I hope when she gets here I don't startle her too much. I just want to give a huge thanks to Chuck, Jordan and the rest of there family for not hesitating to help me out. All around really nice people.

Made it through VA and made a video. Let me know what you think.

Here is a video the NFDF made about the symptoms of Fabry, for those interested in getting a little more insight into what Fabry does.

Had the pleasure of meeting with Jerry Walter today. Jerry is the founder of the National Fabry Disease Foundation http://www.fabrydisease.org/ . He met me in Danville where we were met by abc news 13. After a short interview we had lunch and got to talk about my trip and Fabrys in general. Jerry is one of the most informative people I have met on the subject and I got a lot out of the afternoon. Thanks for everything Jerry.

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