Monday, January 22, 2007

To Congressman Mark Souder

The Honorable Mark E. Souder Member, U.S. House of Representatives3105 Federal Building 1300 S. Harrison StreetFort Wayne, Indiana 46802
Dear Congressman Souder:

My name is Mike Riley, and I was diagnosed with Multiple Sclerosis in July of 2005. I am 20 years old, and I have already seen the devastating effect of the disease. MS can affect anything and everything neurological; from a slight speech impediment to such a severe case of vertigo that you can’t walk or see straight for weeks. I have lived with this disease my whole life, but only recently that I have been able to see the disease lay an aggressive and permanent course. The definition of Multiple Sclerosis is “Many Scars.” The scars I refer to are the lesions in my brain and spinal cord. MS is an autoimmune disease that attacks a thin, protective protein layer, called myelin. The nerve can be likened to an electrical cable; the axon, or nerve fiber that transmits the nerve impulse can be compared to a wire, and the myelin sheath is the insulation around the wire. Myelin is present in both the central nervous system and the peripheral nervous system, but it is only the destruction of central nervous system myelin, that produces the symptoms of M/S.
I believe with all my heart, that if I continue the traditional treatments I am currently using, it will only slightly deter the course of the MS. When I was first diagnosed with Multiple Sclerosis, I started on an Interferon beta-1a medication known as Rebif. I was given Rebif injections three times a week however, one of the largely diagnosed side effects of Rebif is depression. I would sink into deep fits of depression; the drug changed who I was as a person. I hated the feeling of being down all the time, and I felt uncomfortable when my doctor would prescribe anti-depressants. I used Rebif for nine months. During those nine months, I had numerous exacerbations. I was scared for my future, and I knew the Rebif was not doing what it was suppose to be doing. After my doctor agreed that the Rebif was not working as we had hoped it would, I was put on another Interferon beta-1a medication. This medication was Avonex, the number one prescribed MS therapy. Once again, after being on this treatment for months, I had flair up’s. Not only did I experience flair up’s, or short lived MS attacks, but I was also hospitalized in the Emergency Room with a full-blown exacerbation, where the vertigo worsened. I couldn’t shake the violent fits of vomiting. I never know what to expect; I could wake up tomorrow and not be able to walk. I hate that feeling.
I know there is no cure for Multiple Sclerosis. I also know that if I don’t attempt a treatment outside of what is traditionally practiced, I will be in a wheel chair at a young age. I have so much to offer. Northwestern Memorial, hospital in Chicago, offers an autologous hematopoietic stem cell transplant. This treatment may offer me a different future although, I do understand the treatment offers no guarantees. I also know that Stem Cell research will some day cure a whole list of autoimmune diseases. God has opened too many doors for me to turn away from this treatment. I know in my heart that this is what I need, and I am excited to start treatment. My father’s health insurance, Anthem Blue Cross Blue Shield has denied funding this treatment three times. I am currently committed with fundraising through NTAF (National Transplant Assistance Fund). Please consider my request to make this treatment possibility a reality by supporting stem cell research.

I would welcome any other assistance or support you may have to offer.

Mikey Riley

1 comment:

Pam said...

Thanks for stopping by my blog and leaving a comment.

I am sorry to know you have MS... I admire your attitude as you face the daily challenges it brings.

Also, I enjoyed your poem, "I Am."