Cryoglobulinemia Awareness Month/Day - September 23!

  

The rare disease I overcome celebrated it’s 2^nd annual awareness day, Sept. 23! I spent it LIVING with friends and family after passing my hand control driving evaluation/tests. I'm excited to keep moving forward to help more children in need by way of our Foster/Adoption program.

Cryoglobulinemia, a rare disease, is a form of vasculitis, a disease that causes inflammation in the blood vessels.  To be defined as a rare disease, there must be less than 200,000 people known to have been diagnosed.  Due to the fact it is extremely rare, there are no published statistics on the number of people with cryoglobulinemia.

In patients with cryoglobulinemia, when the blood gets below normal body temperature, it precipitates an abnormal protein that causes the blood to become jelly-like.  The thickening of the blood creates damage to the blood vessels and organs throughout the body.  This reaction can lead to complications ranging from skin rashes to organ damage/failure, amputations, strokes and even death. 

It is imperative that the affected person remain warm and avoid stressors that induce a flare up; including, but not limited to, cold temperatures, air conditioning; cold foods or drinks; standing too long; or any emotionally or physically stressful situations. It’s hard to imagine but simple things like grocery shopping, driving and not enough movement cause the blood to pool in extremities and can become deadly activities for a cryoglobulinemic.

Cryoglobulinemia is considered a hidden or an invisible illness.  The person suffering may look fine but actually have significant life-altering fatigue, pain, inflammation, digestion problems, joint aches, concentration issues and more.  The majority of the symptoms are internal; therefore the individual seems “normal” even though he or she has this severe and dangerous disease.  People with cryoglobulinemia tend to suffer in silence. 

Dr. Diane Dike is the founder and director of Second Chance with Saving Grace (SCwSG) 501c(3) nonprofit organization. She started SCwSG in 2007 with a desire to help others and make their dreams come true. She has suffered with cryoglobulinemia for 22+ years. The SCwSG team of volunteers created the worlds first support group for cryo suffers called Cryoglobulinemia Vasculitis Organization (CVO) in 2010. Learn more about this disease or join the support group on Facebook go to: www.facebook.com/groups/318304641519371/

After rescuing Gracie, an injured and homeless Italian Greyhound, Diane trained her to become the world’s first service dog of her type. Gracie helps Diane overcome and more safely live with cryoglobulinemia vasculitis. Amazing!  

Diane shares their incredible story at events, on radio and TV, in magazines, and everywhere possible to raise awareness and help/encourage those who are suffering or caretakers. She was featured on Discovery Health's and Oprah's OWN "Mystery Diagnosis" as "The Woman Whose Legs Turned Black." Her inspirational story continues to reach children, adults and animal lovers of all ages.

To learn more about SCwSG the parent of CVO outreach, to schedule an interview or to become a volunteer, please visit www.DianeDike.org or e-mail Diane at DianeDike@aol.com.

James Nettles and the Diagnosis-Cryoglobulinemia!

CVO Featuring James's Cryoglobulinemia Journey...

My husband James Nettles was always a healthy, hardworking person, but in November of 2008, when the weather in Virginia became cold, he began experiencing pain in his hands and feet. His fingers and toes had begun to turn a dark color. His hands and feet swelled to unimaginable proportions. The pain was excruciating. Thinking he had severe rheumatoid arthritis, the doctors' gave him prednisone. He was taking 60 mg a day. His swelling did diminish somewhat, but the ever-darkening coloring in his toes and fingertips worsened.


Frustrated, we tried a new rheumatologist who also sent us to a hematologist. They both agreed that he should start Cytoxin a chemotherapy drug given by IV. They hoped the immune system would stop attacking itself.


Over the next couple of months, his toes and fingertips became necrotic (dead cell tissue), and the pain was almost more than he could bear even with the strong narcotics. Now, July 2009, the vascular surgeon said the toes would have to be amputated as he was in great risk of infection.


After the amputation things started to improve, and James began taking a new drug for the arthritis. In November of 2009, he again started experiencing the same symptoms. This time however, his toes went necrotic much faster than the previous year. Shocked, we tried a new vascular surgeon. Again James went back in the hospital for a second amputation. The surgeon removed his remaining three toes on his left foot. We left the hospital in mid January of 2010, thinking perhaps this time things would work out better.


A few weeks went by, the wound did not heal and we were desperate for answers. The stress of not being able to keep his heating and air conditioning business going took it's toll on us even while we were afraid he would lose more of his extremities. I decided to e-mail the world famous Mayo Clinic in Rochester, MN.  The surgeon agreed that they may have seen this condition, and, if we could manage, we should go there.


In early February of 2010, we boarded a flight to Minnesota. James could barely stand and was in unbearable pain even with the narcotics. Much of this he doesn’t remember.


We had an appointment with vascular surgeon and the vascular “wound” clinic. One look at his “black” toeless foot and they told us he needed to be admitted as he was in risk of going septic and possibly even dying. After 10 days and endless tests, including a angiogram and a bone marrow biopsy, we returned home. Finally we had a diagnosis: Cryoglobulinemia type 1 and Multiple Myeloma, neither of which we had ever heard of.


A week later, we returned to our local vascular surgeon. Clearly, the wound had not healed from the first two amputations. They admitted him that afternoon. The surgeon again tried to take off the necrotic skin, which was the remaining top part of his left foot. Two weeks passed and still no healing. It was now early March. The determination was made to go higher up the leg in hopes that the larger blood vessels would have better circulation and the wound would heal. Now his fourth amputation, the surgeon took off his left leg below the knee.


Having read information on cryoglublinemia, I requested that the surgeon warm up the operating room and the tools he would use. We are not sure if that was a key factor, but this amputation finally healed.


In all we spent 14 months searching for answers and visited numerous doctors. In September of 2010, James underwent a stem cell transplant and high-dose chemotherapy. The team of doctors at the Medical College of Virginia thought that this procedure would also put the cryoglublinemia in remission. We are happy to report the stem cell was a success and the cancer is now in remission.  As for the cryoglublinemia, we are cautiously optimistic.


We now live in the greater Atlanta, GA. area with our high-school-age son, Derrick, and three dogs.


Anne Nettles, wife CVO Team Members