On September 25th, 2011 I should have been celebrating my first wedding anniversary but instead I was in the hospital unable to feel anything from my waist down. It was then, after many and painful tests, that I received the devastating news that I had Multiple Sclerosis. I was truly afraid that I may never run again let alone walk on my own. Eventually, as is typical of Relapsing Remitting form of Multiple Sclerosis (RRMS), after treatment with high dose steroids and and more “taking it easy” than I ever really wanted, I was able to regain some feeling and function to the point that I could walk again. Sometimes I even felt like I was almost back to normal. Future relapses would affect my back and hands as well as my balance and remissions would allow me to heal a little but mostly required adapting to a “new normal”.
MS is my autoimmune system attacking the myelin sheath protecting my nerves or the tissue in my brain. Even if the acute effects of the attack are stopped through something like high dose steroids, the myelin will never likely heal leaving my nerves somewhat exposed just like stripped electrical wires.
Multiple Sclerosis is a highly unpredictable disease that affects each person very differently. It is so unpredictable that its effects change from day to day and, on good days, it may almost look and feel close to normal. On bad days, I may be back to those frightening days of my my first wedding anniversary where I could not walk or I may not be able to see clearly because the disease has attacked my optic nerve or I may not be able to pick up a water glass to take a drink because I lost control of my hand. Many people can live with RRMS and have few to no relapses and you would never guess that they are fighting an incurable disease every day. I have not been that lucky. I have had a rare aggressive form where I have severe relapses on average every 3 months, I have a large lesion load and am accumulating disability quickly.
There is no cure for Multiple Sclerosis but medications exist to treat some aspects of the disease, typically working by modifying a person’s immune system or soothing some symptoms. Yet all of these treatments come with side effects and other negatives, the biggest of which is they cannot reverse the damage and are not a cure. I know, I have tried a number of them with less than stellar results.
After failing another medication, my neurologist encouraged me to look into clinical trials where I learned about a study out of the the Northwestern University School of Medicine in Chicago that was about to enter Phase III of their research study for a self stem cell transplant. This treatment was pioneered by Dr. Richard Burt and has been being studied for over a decade. Even though the study has been ongoing for much longer than most medications, it is a slow process to bring it to an approved treatment because it includes a course of Chemotherapy. The difference between the disease modifying drugs and this transplant treatment is that once the transplant is complete and my immune system “reboots” the studies show that most patients stop progressing for at least five years and maybe much longer than that. It is also the only treatment proven to reverse disability. Luckily, Dr. Burt has accepted me as a patient and I will be receiving the transplant later this year.
Since Dr. Burt’s research study and the treatment is still in the research phase, most health insurance companies are reluctant to pay for it and it is quite expensive. It looks like I will be very fortunate that my insurance is willing to help pay for some of the treatment costs putting the transplant within reach for me and my family but I will still need your help. Luckily, Chicago is relatively close to my home in Milwaukee but still too far away to stay at home before and after my transplant.
I need your help to raise money for my stay in Chicago both in and out of the hospital as well as to help pay for the parts of my treatment that insurance will not cover. You can help me make the most of my “new normal” and give me some stability from the devastating unpredictability of Multiple Sclerosis.
Family and friends of Katherine Hall are raising money to pay for uninsured medical expenses associated with transplantation.
Katherine has chosen to fundraise with Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility to the full extent allowed by law for donors. Donors can be sure that funds donated will be used only to pay or reimburse medically-related expenses. To make a donation to this fundraising campaign, click on the Donate Now button.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
