I'm raising money for my best friend Amanda and her family. Amanda has been diagnosed with Dysautonomia/POTS, Elhers-Danlos Syndrome and now Gastroparesis, and now she has to get a permanent feeding tube.
Amanda is my best friend, I have known her for about 20 yrs and she has been battling several different health conditions over the course of those years. The three most challenging diagnosis for Amanda today are Dysautonomia/POTS, Elhers-Danlos Syndrome and Gastroparesis.
Dysautonomia/POTS is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the "automatic" functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in light headedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death. For Amanda, temperature control affects her daily life as well as light headedness and unstable blood pressure.
Ehlers-Danlos syndrome is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls. Connective tissue is a complex mixture of proteins and other substances that provide strength and elasticity to the underlying structures in your body.
People who have Ehlers-Danlos syndrome usually have overly flexible joints and stretchy, fragile skin. This can become a problem if you have a wound that requires stitches, because the skin often isn't strong enough to hold them. It can also cause you to dislocate joints very easily causing discomfort, pain and loss of mobility for hours and sometimes even days. Amanda has to wear braces everyday to help keep her joints from dislocating.
Gastroparesis is a condition in which your stomach cannot empty itself of food in a normal fashion. ... A damaged vagus nerve prevents the muscles in the stomach and intestine from functioning, preventing food from moving through the digestive system properly. Amanda now has to be on a permanent feeding tube placement and will be having that surgery in January. Right now she has the NJ tube which we are praying is just temporary.
Amanda is as mom of 3 boys and she is married to a wonderful man whom works to the bone despite his own oncoming disabilities. He works a lot of hours as well as taking care of what he can at home with Amandas care, cleaning and with the children.
This family struggles with medical barriers and keeping a float financially. My best friend tries very hard to go about each and every day with a smile on her face however the struggles at times can be very overwhelming to her, especially when life throws a new curveball.
I love my best friend very much and in raising this money I hope that I can help make a difference in her families life, allowing them to get their vehicle fixed, bills cought up and help in getting the medical supplies Amanda needs, that are not covered by her insurance. And hopefully take a little stress off of her wonderful husband so he can take care of his own medical needs so he can better care for her in the future.
Thank you for your donations and God bless!!
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