How would it feel if you could help find a cure for a very rare disease called Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and change the life of so many, especially mine and my families:
Thank you for taking the time to visit my page.
My name is Gwen Lanier and my husband's name is Don Lanier. We have 5 children and 1 granddaughter that is the love of our lives.
My journey began quite a few years ago when I was diagnosed with Fibromyalgia. I was treated for the symptoms for many years but noticed that nothing seemed to help and in fact the symptoms were getting worse. I was eventually referred to a Neurologist by the name of Dr. Philip S. Blum, MD and thank God that I was.
This is where my journey and my family's journey changed course and we have had to make many changes in our lives. After a spinal tap, blood tests, nerve tests and tests that I can't even pronounce he informed me that I had what is called, Chronic Inflammatory Demyelinating Polyneuropathy (CIDP).
I was shocked but he gave me hope in that he said that there were a few treatment options that could help the disease go into remission as that now there is no known cure. CIDP is a form of nerve disease or peripheral neuropathy. The disease can often be difficult to diagnose as it was in my case. My symptoms were all over the place, for years I felt like I always had the flu, I was getting weak and I started getting numb areas and over the last year my body has become so painful that I can hardly hold my granddaughter or be touched when my family tries to hug me. I think that that hurts more than the disease at times.
After my diagnosis I was given 4 types of treatments that are supposed to help put the CIDP into remission. I went through Solumedrol (a steroid), Intravenous immunoglobulin (IVIG), Plasmapheresis (basically dialysis for CIDP), and then my last treatment of Chemotherapy. None of these produced any improvements and I have in fact gotten worse and weaker.
My last visit with my Doctor was like hitting a wall. "Gwen, we have done everything and that is it". All I could do is break down and cry and ask myself "why did not anything work"? He went on to inform me that we have one option left and that is a Clinical Study, Stem cell Transplant in Chicago at Northwestern Memorial Hospital under the direction of Dr. Richard Burt.
Since this is so far away and it is a clinical study and my, our, last hope we will have to spend up to three months there for the study and treatment and as you can guess it is costly.
My husband always talks of paying it forward and we have always done what we can to pay it forward when we can but now we must humble ourselves and we ask for your help in donating to help with the cost of travel and living expenses while we have to go back and forth to Chicago for the treatment. This is indeed my last chance at getting my life back and for me to be whom I used to be. With your help I pray that I can. You can follow our journey here http://cidpourjourney.wordpress.com/ as we will update you on my progress.
Thank you and God Bless.
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