A Zebra's Hope (Lauren Bailey)
Lauren's Ehlers Danlos journey began four years ago with a broken toe from a soccer game. After a few months of physical therapy she still had pain so she saw the pain management clinic at Cincinnati in June 2016. There she was diagnosed with Ehlers Danlos Syndrome (EDS) and Chronic Regional Pain Syndrome (CRPS).
In the years since she has also developed the comorbid conditions of gastroparesis and dysautonomia. With the dysautonomia, it’s suspected that she has Postural Orthostatic Tachycardia Syndrome (POTS). EDS is a mutation in your collagen and causes lots of different problems such as frequent dislocations, fatigue, brain fog, and many others. POTS is an autonomic nervous system dysfunction and causes high heart rate, awful fatigue, palpitations, dizziness, light headedness, and many others as well.
Sadly, there is no easy cure for Lauren. There is no pill to fix these issues and overcome her pain, nausea, insomnia, and dizziness.
Two weeks ago I attended a chronic pain seminar. The keynote speaker was Dr. Katinka van der Merwe. She heads a clinic in Fayetteville, Arkansas, called the Spero Clinic. "Spero" is Italian for "hope".
"Our mission is to help the hopeless reclaim their lives. The clinic is where neurology and brain-based chiropractic techniques meet functional medicine. This allows your nervous system to overcome chronic pain and neurologic disorder" -- The Spero Clinic
The Spero Clinic is a medical treatment center that specializes in resetting the central nervous systems and the brain and reducing inflammation and chronic infections in the body, especially in the vagus nerve. It's the only clinic in the world offering its specific combination of treatments. Patients from Australia and Great Britain have come for treatment.
When I first presented the idea of this clinic to her, she was very leery and hesitant. The remote possibility that she may not feel this way forever was just not believable for her. Her hope had withered away. As she began to check them out and follow them on their social media platforms, she began to talk about the possibility of going next summer...then next semester...then after a really rough day last week it became "I'm done with this. I want to go to Spero as soon as I can".
Here is what Spero does:
✔️ Balance the brain and nervous system for natural healing of pain triggers
✔️ Decrease inflammation which can reduce burning, shooting, stabbing pain and restore tone to the vagus nerve. Bringing balance to the autonomic nervous system for improved health, energy, and mental function
✔️ Magnetic resonance therapy for an improved immune system which reduces anxiety and stress
✔️ Reprogram the body with neuromuscular re-education for balance, coordination, and elimination of “stuck” patterns of emotion, illness, and trauma.
✔️ Personalized body retraining that eliminates “Pain States” so the brain relearns function
✔️ Atrophy prevention, relaxation of muscle spasms and improved blood circulation including increase range of motion
✔️ Oxygen therapy floods the body with healing nutrients through previously blocked pathways
✔️ Reduce scar tissue that blocks the flow of electric current and healing through your nerves
✔️ Heart rate therapy reads, maps, and translates your heart rate into healing sound frequencies.
Please watch the included documentary video to understand more what The Spero Clinic does and how it has helped so many CRPS and EDS patients.
Many of the above activities are unconventional. We know that.
Well conventional medicine thus far has NOT helped our daughter.
Because most items do not fall into the medical category of conventional medicine, our health insurance sadly does not cover this program.
A local friend estimated that her daughter's cost was $25,000 a few years ago. Spero estimates costs of $2700 to $3000 per week. Lauren and I will be in Fayetteville Sunday night to Thursday early afternoon then returning to Ohio most weekends. We are currently working to secure longer term accommodations so that we don't have to take everything with us on each trip home.
Lauren got this zebra tattoo last November.
“When you hear the sound of hooves, think horses, not zebras.” This phrase is taught to medical students throughout their training. In medicine, the term “zebra” is used in reference to a rare disease or condition. ... Ehlers-Danlos syndrome is considered a rare condition and so EDS sufferers are known as medical zebras.
Two years ago, Lauren permanently hung up her soccer cleats and found a new passion - marching band. She loves to play the flute and is a flute section leader. Sadly due to the constant dizziness of the dysautonomia, Lauren had to pull back and will not march in this year's marching band; this was potentially devastating however her band director accommodated her and she performs in an octet and conducts a movement in this year's performance.
To know Lauren is to know a hero. She always fights and never stops smiling. She gives to others and recklessly loves those she knows.
However our reality is silent tears behind closed doors when she feels out of control of her body, pain, and future. Many days, we sit crying together when we look into the future and what it may mean for her.
She wants so badly to be a nurse and give to kids what so many amazing nurses have given to her. However she must balance this desire with the reality of her health.
The Spero Clinic gives her hope.
Lauren and I leave Sunday, September 29 to start her healing. Many pieces have fallen perfectly into place and we know that God has placed Spero into our lives at the right time for Lauren Elisabeth.
Please help us make this clinic a reality for our daughter.
Dum Spiro Spero - "While I breathe, I hope"