In February of 2016 Zoe started complaining of a sharp pain in her ankle. She was limping so prominently that within a week we borrowed her cousins old crutches. As bodyworkers we tried massage, but even the lightest touch caused more pain. We started with an overpriced Lyme Specialist in NY (gave no answers), then took her to Connecticut Children's Hospital at the end of March where she was diagnosed with a neurological condition called Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD).
CRPS is not well understood by most doctors, and family, friends, and teachers often find it difficult to understand because they cannot see the person's pain (visibly or through xrays, MRIs etc). Flares fluctuate, so one week Zoe may be walking, while the next week she might be bedridden. She can be in remission in July, then fully symptomatic in October.
CRPS is debilitating and its negative effects are cumulative. The patient loses circulation and function of the affected area, leading to atrophy. Exercise, which is an important course of treatment - is incredibly painful. It has been called the most painful condition known in western culture.
The autonomic nervous system gets stuck in a loop that amplifies pain and can migrate to other areas of the body. It causes Allodynia (pain from normal stimuli such as temperature change, small vibration such as going over a small bump while riding in a car, even the sensation of wind on the skin). The affected area has strange skin coloring, sometimes swollen, and has rapid hair and nail growth. Last fall, CRPS moved to Zoe's torso and she had to wrap her abdomen in plastic wrap because even the sensation of her shirt brushing against her skin was excruciating.
Since last year, her CRPS has moved from her right foot, up her leg, hip, torso and now her shoulder and face. Allodynia has started in her left foot for the past month, and she has recently been losing her hair. This syndrome seems to have no sympathy for the sufferer and while there is hope for adolescent patients, its nickname among adult patients is "the Suicide Disease" because that seems to be the only way out of the pain.
To add insult to injury, after about a year of CRPS, she was diagnosed with Postural Orthostatic Tachyardia Syndrome (POTS), which makes her heart rate and blood pressure fluctuate unpredictably. This is a common side-syndrome to CRPS that leads to lightheaded, dizzy moments and if not in check, she can faint. POTS also creates extreme fatigue.
Today, Zoe is in a wheelchair. She goes to school part time and struggles to take just the basic required classes. Needless to say, Zoes academic future is inhibited by her condition, and her life, her bright light - has diminished considerably.
We recently found a Doctor with documented success in treating CRPS. Dr Katinka van der Merwe operates The Neurologic Pain Relief Center in Fayetteville, Arkansas. This Doctors intent is not to block pain signals with pills, or place a permanent device to “scramble” her nerves, but to discover and release the origin of her pain. She practices on the cutting edge of pain science.
The costs are out-of-pocket and overwhelming, as insurance does not cover the clinics fee, not to mention the travel, lodging, lost income, and other expenses associated with an 8 to 12 week out-patient intensive program. We are seeking out this form of treatment because no other Doctor or treatment protocol has eased our daughters pain or stopped its progression.
After talking to this Doctor, Tina, Lucy and I, but especially Zoe have found hope for the first time. We are following our gut and taking a leap of faith, but we can’t do it alone. It is really difficult for us to extend this request, but Zoe has suffered - and our family has struggled - for far too long.
We gave “Zoe” her name the minute we saw her newborn face. Zoe means “LIFE”.
We humbly ask you to help us help Zoe get her life back.
In peace and gratitude…
Tina and Rick Haesche
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