In December 2000, Susan Kiechel began experiencing problems picking up her feet. This was devastating to the former star athlete. After many tests, Susan was diagnosed with Charcot Marie Tooth (CMT). 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 Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). 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. The IVIG treatments also 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 235 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 unless she secures the life-saving treatment she needs.