Growing up, Susan was alway active in sports. Throughout Middle School and High School she played on the basketball, softball, and soccer teams. At Auburn University, Susan played on the intramural soccer team. The school did not have a Varsity Women’s Soccer team. Susan saw the injustice in the difference of funding for men’s and women’s sports teams and she did something about it. After two years of research, she determined that 12% of funds were being used for women’s sports teams while half the student population was female. She also polled women on campus and found ample support for a women’s varsity soccer team. She then appealed to the university to implement a varsity soccer team. Upon their refusal, Susan took the issue to the Office of Civil Rights at the Education Department and sued Auburn under Title IX of the federal education code which bars discrimination on the basis of gender. The University settled out of court in 1993 and agreed to fund a women’s varsity soccer team. At this point, Susan was no longer eligible to play but today Auburn has a first class women’s varsity soccer team. Recently, Susan returned to Auburn to see the team play on the field she helped to build. She also bestowed the honor of naming rights to the field (that she held but never used) to current coach, Karen Hoppa.
I tell you this story so you have a glimpse of the fighter that is Susan Kiechel. Susan is now in a different fight - she is fighting for her life.
You see, in December 2000 Susan began experiencing problems picking up her feet. This was devastating to a star athlete. After many tests, Susan was diagnosed with CMTX. This is a genetically inherited, rare, progressive neurological disease that affects the myelin sheath that wraps around the peripheral nerves that control muscles and causes it to slowly shred apart. Over time it causes the loss of normal function to the lower legs/feet and hands/arms. Within 4 months she required leg braces and forearm crutches to walk. The progression of her disease was much quicker and more severe than expected, so she sought additional care from the CMT clinic at Wayne State in Detroit in July 2001. The specialists there quickly realized something wasn’t right and began further, more extensive testing. Her illness was progressing too quickly and becoming too severe to be explained only by the CMT.
In July 2001, Susan was diagnosed with another rare neurological disease called CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). The CIDP was in addition to the CMT. Susan was now fighting two rare and progressive neurological diseases. CIDP is an autoimmune disease that causes the immune system to think the myelin sheath around the nerves is a foreign body and causes the body’s immune system to aggressively attack it. In most cases, CIDP only affects the limbs, though it generally causes paralysis. However, in 5-10% of cases, CIDP progresses to affect the trunk and becomes a life threatening illness because it will affect the nerves around the vital organs. In December 2002, Susan joined the 5-10% of CIDP patients with a life threatening version of the disease.
To slow the progression of CIDP, Susan began Intravenous immunoglobulin (IVIG) treatments on September 12, 2001. These treatments require a hospital stay every 28 days. Susan was determined to fight to slow the progression of these diseases so her children would have a mother alive to raise them. While the treatments have slowed the progression and kept her alive, they have come at an extremely high price. Each month, the disease is able to make some progress. The IVIG slows the progress but it does not stop it. Complications of IVIG treatment include stripping the body of magnesium, Vitamin D, and iron. To counter this, Susan must receive multiple infusions of magnesium and iron each month along with countless other medications to treat the side effects of the IVIG treatment. Also, the IVIG treatments induce meningitis which is the swelling of the membrane surrounding the brain and spinal cord. This swelling threatens Susan life constantly and causes excruciating pain. Each month, Susan’s neurological team walks the line of giving enough treatment to keep her alive but not enough that it does more harm.
Susan has endured 232 monthly treatments. This far surpasses the amount of IVIG treatments any other patient in the world has completed. While the treatments have slowed the progression of the CIDP, they are also damaging her body every month. Susan’s body can not withstand many more treatments. She will die soon.
Susan has fought every day for over 17 years to stay alive until a treatment could be found. That day has arrived. Clinical trials show Stem Cell Transplant is a very effective treatment for her neurological disease. She has gone through all the testing phases and has been APPROVED by doctors in Charlotte to received a Stem Cell Transplant. This procedure will save her life. It will end her 17 year struggle. It will return her to her husband and children. It will help her lead a normal life for the first time in 20 years. The only thing standing in the way…….money. Processing the stem cell transplant through insurance is not an option. The only option the hospital is providing Susan is an upfront cash payment. Please help us raise the money for Susan to receive this Stem Cell Transplant. Please don’t let money be the reason a wife, mother, advocate, fighter, hero dies.
We thank you for your participation. Please donate and please spread the word. To us, you too will join the rank of a hero.
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