Friday, 7 June 2013

CIDP and my journey to cure it

I suffer from CIDP (Chronic Inflammatory Demyelineating Polyneuropathy) 

CIDP is a disease affecting the peripheral nervous system. My illness was diagnosed in November 2003, and at that time my only disability was a slight tremor in my hands.

Unfortunately, my condition worsened over the years to the extent that I now exhibit the following symptoms.
  1. Hand tremors
  2. Poor balance
  3. Weakness in arms and legs
  4. Little sensation in feet or finger tips
  5. Clawing of my hands
  6. Foot drop in my left leg
  7. Loss of hearing
When I go to sleep at night, my body is wracked with tingling and nerve pain. 

But this is the life that I have grown accustomed to as the illness progressed, and I have to live with it.

But not anymore!!

Dr Burt at Northwestern Memorial Hospital (NMH) in Chicago is carrying out a clinical trial using haemotopoetic stem cell transplant to treat people with CIDP. I have been offered an appointment at NMH to evaluate my condition to see if I qualify under the criteria of the trial. If I do qualify, the next step would be to move onto transplant.

The Science Bit
There are embryonic stem cells from embryos and haematopoetic stem cells from the blood. The trial I am hoping to be accepted for uses stem cells which will be harvested from my blood. These stem cells are more mature than embryonic ones, but are still undifferentiated enough to form all the components of the blood, including the immune cells. 

The basic idea of SCT is to "Treat the illness not the symptom". In order to do this my defective immune system (being the cause of my disease) is wiped out with chemotherapy. This is followed by using the haematopoetic stem cells to build a new immune system without memory of the 'trigger' that is causing the attack on my peripheral nerves. 

With the disease having been removed by chemotherapy, my recovery from disability is dependent on how well my body can repair the existing nerve damage and muscle loss.

The building blocks of my plan are falling into place ..
  • Medical notes sent to Chicago
  • Conference call with Dr Burt completed
  • Evaluation schedule from NMH received
  • Cancelled my wife's patient list for 2 months
  • Arranged to pull my girls out of school 4 weeks early
  • Flights booked
  • Accommodation booked 
I'm now ready to go the full 12 rounds against CIDP, hoping for a TKO

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