Amy Daniels treated for Systemic Scleroderma

Date: 03/13/2008

A year and a half ago I was writing a letter to my husband to let him know that it was okay to move on and love again, that it was okay to let the girls call another woman “mommy”.

I was trying to write down all of the wisdom, thoughts, lessons, ideas, memories and feelings that I had come to acquire over my 37 years into a short narrative.  It would be something that my daughters could pick up in the future to find comfort in- The Unwanted Advice I would never be able to spew.

Faced with the real possibility that I would not live long enough for my youngest child to remember me, I urged my husband to take lots of pictures of me with my girls.  Afraid I would never see The Magic Kingdom through my children’s eyes, we took a trip to Walt Disney World.  A year and a half ago, I was just waiting to die.

At 37- I had a comfortable, happy life- two amazing children, an incredible husband, a part time career, a wonderful family, lots of friends and a nice house in the suburbs. Yes, in October of 2004 I had it all.  Including, I would come to find out, Systemic Scleroderma.

Scleroderma is a rare autoimmune disease that affects connective tissue in the body.  This tissue supports your skin and internal organs.  It is known as the disease that “turns people into stone”.  As the disease progresses, your organs can grow hard and thick.  The skin on your face gets so taut that it can drastically affect your appearance. You can loose the ability to chew and to close your mouth.  It can change the way you speak.
The skin on your hands can get so tight that your fingers become fixed in a clawed position, completely useless.  You can loose the ability to walk.  The blood vessels can narrow, resulting in a loss of circulation.

Raynaud’s can lead to painful sores that can take years to heal and often lead to amputations.  The digestive tract can become inflamed, causing heartburn and eventually the inability to eat.  The GI tract can become affected leading to malabsorption of nutrients, diarrhea and constipation.  Your kidneys can fail. Muscles and joints can become inflamed and painful.  The lungs become stiff, making it difficult and eventually impossible to breathe.  Your heart can become scarred and weak, making it unable to efficiently pump.

There are an estimated 300,000 people in the U.S. who have Scleroderma.   It is more prevalent in females and its onset is most frequently between the ages of 25 to 55.  Those of us with the most aggressive form have a 50/50 chance of dying within five years.

Everyone who has Scleroderma has it differently.  I had moderate skin thickening of my face, chest and arms.  I could not pinch any extra skin.  My face was so tight that I couldn’t bend my head backwards.  It was getting hard to keep my mouth closed.  The ligaments in my mouth were weakening, causing all my teeth to be loose.

My appearance was starting to change.  My pigmentation changed.  My chest itched constantly.  I could not raise my arms above my head-when I tried it felt like the skin on my abdomen was ripping.  I could not make a fist, cross my fingers or whistle.  I could no longer button or zipper, tie shoes, do my girl’s hair, floss my teeth, cut up food, or open any jar.  My fingers were so sensitive that turning on a light was painful.

All of these things, as annoying as they could be, were just things I had to deal with and adjust to-Learn to live with.

Then it started to attack my lungs.  I went from a total lung capacity of over 90% to 43% in a matter of months.

The bases of my lungs were starting to harden and I had extensive inflammation throughout all lobes.  The doctors could see it and hear it.  I could feel it.  I could no longer race up the stairs two at a time.  There were times I had to concentrate on breathing in order to catch my breath.  I could no longer keep up with my kids.  I’d tire very easily.  I was slowly making my way towards oxygen.  I was slowly making my way to an early demise.

I was told there was no cure for Scleroderma.

All of the medications and treatments that were routinely prescribed might work for one person but not for another. Most are risky- with numerous, nasty side effects.  Many of them do absolutely nothing to abate this disease, even for a day.  And most carry a lengthy time commitment. I had almost no hope.

Then I found Dr. Richard Burt and a treatment that has shown unbelievable promise for halting the progression of Scleroderma, and potentially revesing some of the damage. That treatment is an Autologous Stem Cell Transplant.  Autologous meaning-MY OWN STEM CELLS.  I started my procedure on March 2 2007.
My own stem cells were collected thru an IV (using a machine-similar to a dialysis machine).  I was given chemotherapy and immunosuppresents to wipe out my immune system.  On April 10 2007-my own stem cells were then reinfused (just like a blood transfusion).  It was 21 days of rigorous, but hardly insurmountable treatment.   Who would have thought that the same body that was wrecking such havoc on itself was also capable of healing itself.

Now, Dr. Burt can tell you all of the specific percentages and numbers-the outcome of the study—which I know to be very compelling.  But I can tell you and show you the specific benefits. I can cross my fingers.  I can make a fist.  I can pinch an inch.  I can lift my arms over my head and drop my head back without any discomfort.  I can whistle again.  I was never very good at it.  I can open my mouth wide enough to yell at my children.  I can button my own buttons and help my kids get dressed.  I can fix their hair.  I can help them bathe.
I can go up a flight of stairs.  I can chase my kids around the park.

I am back at work. 6 months after my transplant, my lung capacity went from a 43% to a 57%.  The doctors can no longer hear it in my lungs.  I can no longer feel it.  The most important change is that I now have hope.

I have hope that I will see my daughters next recital, prom and weddings.  I have hope that I will be giving them useless advice for years to come.  I have hope that I will celebrate my 50th wedding anniversary.  And I also have hope that because of Dr. Burt and others working with adult and cord blood stem cell research, my daughters will never ever have to face anything like I have.

Today, thanks to Dr. Richard Burt and my own adult stem cells, I know without a doubt, that I have just as much chance of being here in five years as any of you.

Thank you.