Our names are Craig and Amanda South and our 16-year-old daughter, Kalley South, has an autoimmune disease called Dercums.
Dercum's occurs when the body's immune system loses its ability to tell the difference between foreign materials and its own cells, so it starts attacking its own tissue (autoimmunity).
This flare-up results in painful lumps (lipomas) that multiply and grow while pressing on nerve endings throughout Kalley's body, causing severe pain.
There is no cure.
Basically, there are 3 treatment options for Dercums:
1. Surgeries to remove the lumps. The problem is that they keep growing back, and they multiply. Since Kalley was diagnosed, she has had 8 surgeries to remove them, and more have returned in their place. This is an unsustainable option.
2. Opioids for pain relief. Because of the addiction crisis in America, I do not think I have to explain why this is not a lifelong option for Kalley.
3. Cyclic Variations in Adaptive Conditioning ™ (CVAC™) pod. A CVAC pod, manufactured in California, has been used in studies to successfully treat Dercums.
However, there are only a few CVAC machines located on the Eastcoast in the United States.
In order for this treatment to work, Kalley must take them every other day for the rest of her life.
Finally, the machine costs $128,000 (not including set up, training, and maintenance).
As you can see, the solution is so simple and yet the price is steep because of the technology and extensive mechanics of this machine.
That is why we are asking for help from supporters.
Kalley is no stranger to autoimmune disease. Kalley's history with autoimmunity has been chronicled on East Tennessee Children's Hospital GI for Kids website.
We are currently in Florida now where Kalley has already started receiving treatments for Dercum's and she is seeing some results. She has to have treatments every weekday for 2 weeks and then a minimum of every other day to keep the masses shrunk.
Any amount that you can give will be greatly appreciated ❤
God has been so good to us through all of this, especially Kalley. He has given her such strength and grace!!
Thanks everyone again ❤
Craig and Amanda South
A Blog Started to Help Others with Dercums and to Update Friends and Family about Kalley
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