The Big Picture

2 Jan

My grandmother died with one of the most severe forms of rheumatoid arthritis imaginable.  RA is an autoimmune dysfunction.  My Mother has lupus, also an autoimmune dysfunction.  You are here because you know that I have multiple sclerosis, an autoimmune dysfunction.  There is no question that genetics plays a key role here and that the women in particular in my family seem to be plagued by varying degrees of autoimmune dysfunction.  Worry is a waste of precious energy, but I must confess to giving every minor hiccup my daughter experiences more than a moment’s pause to wonder, “Is this it?”

Hematopoietic Stem Cell Transplant with chemotherapy offers the opportunity to shut down a broken immune system and reboot it with no memory of dysfunction.  This is not just good news for people with Multiple Sclerosis, as it is a therapy that has proven effective for a number of autoimmune dysfunctions.

There is some debate as to whether this effectively “cures” immune dysfunction, or if it puts into effect a strong remission.  My personal understanding is that the genetic floor that caused the disease in the first place is not removed by chemotherapy, therefore the DNA components still exist.  I understand this to mean that the disease is shut down, packed up, wrapped in miles of packing tape, and stored neatly in a dark corner of my body’s attic.  Just like in a horror movie, some unsuspecting environmental youngster might stumble on this box many years down the road and open it up, ending my remission.  While I understand this is a possibility, the results of research thus far have proven to allow two years of recovery followed by ten+ years of being disease free.  As far as I am concerned, this gets me all the way through my kids’ time at home with us.

Many have asked me why this therapy is not available in the United States, if it is so effective.  Currently, HSCT with chemotherapy is being offered under the direction of Dr. Richard Burt in Chicago.  It is very expensive and the standards to get accepted are strict.  (Again, for MSers following along: I’d look here first.)  He is in Phase III trials, the final step to making it available across the country.  The process is very slow because funding is difficult to come by. Adult stem cells are boring old news and embryonic stem cell research is where all the buzz is.  It is difficult to get money from investors when there is no money to be made and there is no money to be made in curing MS.

This research is patient driven. The kind of people who push for and invest in HSCT research are not people looking to make a dollar, they are people like me.   The only way to mainstream HSCT as a protocol for the relief of autoimmune dysfunction is if people like me keep demanding it, chasing it, and proving it.   I have limited funds that I can invest, but I am happy to invest my own body into the research that I believe will one day revolutionize treatment for the very condition which has robbed me, my grandmother, my mother, my cousins, and so many countless others.

I know that for many, I am the scrawny kid at the top of the very high dive, knocked kneed and daring myself to jump.   There are many who are watching me very closely, because as soon as I bob up to the top of the water and give the thumbs up, they are going to scramble for that ladder.  When you invest in my jump, you invest in their hope.

6 Responses to “The Big Picture”

  1. Linda Benskin January 2, 2012 at 12:47 pm #

    Wonderful post, Amy! You go, girl!

    I was really depressed yesterday because my research funding evaporated and I can’t seem to get anything I write accepted these days. Your imagery about the high dive made me smile again. Chase away the imposter syndrome and do this thing!

    • ericswife January 2, 2012 at 1:09 pm #

      You have been the kid at the top of the high dive for many people. Having you cheer for me has been encouragement beyond proper thanks. May we both step away from the imposter syndrome and get what we’re after.

  2. Mike Glenn January 5, 2012 at 4:03 pm #

    Loved your post and especially the last sentence…..investing in your jump gives hope to others…..Thank you for not being concerned for you health only but willing to take the leap so others can benefit……Praying as you march forward and as you be that source of encouragement to others…..

    • ericswife January 7, 2012 at 1:01 pm #

      I only learned about the options available to me because of other patients who went before me. I feel like I need to pay it forward. Thank you for praying about that leg of this journey as well. It means a good deal to me.

  3. Jerry & Dorthy Houchin January 7, 2012 at 12:38 pm #

    Amy, I’m sorry that I have neglected your blog to know what has been going on in your life. I’m so thankful that God allowed you to find help in the avenue you are going. It has to be very scary and I loved your writing about barely holding on. I know none of us know the extent of your illness and the pain and anxiety involved but we do know a God who loves you and upholds you and wraps His arms around you. Please know that we will be in prayer and will be looking forward to sending a donation to help you. Stay strong in your faith that God is holding you up and let others be your prayer warriors. God bless, Dorthy Houchin

    • ericswife January 7, 2012 at 1:00 pm #

      I love you, Dorthy! (And Jerry, too!) Thank you for being my prayer warrior. I am excited about this journey and having all this support takes the scary edge off.

Honest Truth About Me: I'm going to need a lot of cheer leading to see this through. Your comments and encouragement mean the world to me.

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