Complex regional pain syndrome (CRPS) is a chronic pain condition that most often affects one limb (arm, leg, hand, or foot) usually after an injury. CRPS is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems. It’s a cruel condition that is both rare and unbelievably expensive to treat.
Basically her brain is stuck in a constant state of "fight or flight" in which her pain receptors cannot turn off. She's in persistent chronic pain at an unbelievably high level. Think of it like this; if I were to blow gently on her foot, to her it feels like frostbite. The warmth of my hand would feel like a blazing fire. A stroke using a baby bird’s feather is like razor blades. Needless to say it a terrible way to spend even a few weeks and Annabella has been living with this for six months! Recovery is woefully slow, but there is great hope in the treatments we are seeking. However, they come at seemingly insurmountable costs.
This disease is not easy to treat, and over the past 6 months we are learning more and more about how this effects Annabella's brain and body, not just her foot.
Annabella has a very strong spirit and is determined to make the most of this regardless of the difficulties she faces. She has missed very little school, and outside of medical appointments, she refuses to be absent from a school, the teachers, the friends and the lessons that she loves. However, because of this disease, Annabella had to forego a class camping and surfing trip that she called her 'dream trip.' Missing out on this trip was so extremely disappointing for her.
Annabella optimistically yearns for a pain free future in which she walks without the use of crutches. She has plans to once again rock-climb, ride a horse, sail in the sea, participate in all her class trips, and maybe even attend a special “sleep away” summer camp in a majestic forest surrounded by nature which she deeply reveres.
Insurance is a cruel joke that offers little to no coverage - The only hope Annabella has for recovery comes at a price designed to decimate my family financially. It has been a constant battle to get treatments covered and the treatments that are the most promising and that hold the highest potential for recovery can only be attained “out of pocket.”
Annabella has been seen by a podiatrist, 2 pediatric neurologists, 1 orthopedic doctor, 2 chiropractors, a massage therapist, a functional doctor, 2 physical therapists, a cognitive behavioral therapist, a hypnotherapist, and a doctor who uses scrambler therapy. I have also spoken to several pain specialists, and too many to count physical therapists.
To date, we have spent about $10,000, trying both traditional therapies as well as some cutting edge therapies, like scrambler therapy. Through the use of scrambler therapy (a type of electrotherapy that uses no-pain signals to disrupt the constant pain signals), we were able to arrest the allodynia that had spread up her leg. However, it has not yet provided her relief in her foot. Annabella is currently working with a fabulous cognitive behavioral therapist to deal with the chronic pain and also help her face the fact that she will have to endure even more pain to become functional again. Annabella is also working with a very talented physical therapist, who comes highly recommend. He practices osteopathic manual physical therapy and is not only working on getting her functional, but also working on all the systems of her body (her brain, spinal column, nervous system and lymphatic system) which have been affected by this disease.
Currently, just with the basics - physical therapy, cognitive behavioral therapy, and Annabella's medicines and supplements, we are spending between $500-$700/week out of pocket.
So here we are and we simply do not have a large enough pocket (does anyone really?). So we turn to you: friends, family and good people of the world. So many of you have asked how you can help, and all we really want is to continue providing Annabella with the best possible chance at remission. Perhaps our story can reach a few hundred(s) of you each with $20.00 to spare and together we can realize Annabella’s dream to simply live her life with as little or no pain as possible!
- Eimear Zone
- Johanna Young
- Anne Babitz
- Teresa Baloyra Albert
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