Emily has been referred to doctors in Davenport, at the University of Iowa, and finally to Mayo Clinic. She has been diagnosed with Type 3 Hyper-mobility, Ehlers Danlos Syndrome which is a genetic disorder that affects the collagen in her connective tissues, causing her joints to be unstable and to sublux and dislocate. She also suffers from chronic joint pain. Emily has recently been given a secondary diagnosis, Conversion Disorder, which is a break -down in the brain that is causing extreme muscles spasms in her shoulders and scapula that cannot be controlled by medication or physical therapy. Acute and chronic pain, anxiety, and stress on her body cause Emily's brain to subconsciously convert the trauma into a physical response...in her case, muscle spasms.
As could be imagined Emily's medical issues have taken a toll on both her and our family. Over the past 2 1/2yrs., Emily has missed many months of school due to surgeries and post-op pain, immobilization and rehabilitation, attending less than 3 weeks last year and doing all classes this year online. She has been on heavy doses of pain medication and muscle relaxers and spends most of her days in a recliner unable to participate in the normal activities of teenage life. I, her mother, had to leave my full-time position as a nurse due to the frequent hospitalizations and need to care for Emily following her many surgeries. In addition, the many trips to Rochester, gas, hotel, food, and childcare for my younger daughter has caused financial strain on our family.
Emily has been seen by a plethora of medical specialist at Mayo Clinic, and they are all in agreement that her best chance of managing her pain is to participate in an intense, three week, out-patient pain rehabilitation clinic for adolescents at Mayo. There are only 2 pain clinics like this in the country that offer the intense multidisciplinary therapies and monitoring that the doctors say Emily needs to minimize her pain, adjust her medication, and to help retrain her brain so it does not cause the painful muscle spasms. While Emily will always have chronic pain, this comprehensive program will give her the tools to learn to live with and manage the pain and allow her to function more normally.
The issue is that Emily's insurance has denied coverage of the pain clinic, which cost around $37,000, because it is out of network. We have appealed the decision the maximum amount of times allowed. We have a second insurance who has out of network benefits that cover at 60/40, but because so many of the things offered such as physical and occupational therapy, and psychotherapy are offered in-network they will not cover that portion. If insurance were to come through we would pay people back who would request it, otherwise the monies would go towards other medical expenses we have incurred and future expenses. There is no other pain clinic within Iowa that can offer Emily the intense therapies that the doctors say she needs. This is her one best hope of learning how to live with a debilitating disease, to manage her chronic pain, and to retrain her brain to overcome the Conversion Disorder. We have enrolled Emily in the pain clinic for the session that begins April 10th, and are appealing to the generosity and kindness of anyone who might be willing to help defray the cost by any amount. An account has been set up to accept donations to help cover the cost of the pain clinic. Thank you and God Bless you and yours.
Checks may be made out to: (Emily Pfiffner Benefit)
Dupaco Community Credit Union
3299 Hillcrest Rd.
Dubuque, IA 52004-0179
DonationsSee top donations
- Elayne Lansing
- Steve Kluck
- Jamie Becker
- Tim & Mary Kay Pancratz
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Contact us with your questions and we’ll answer, day or night. Learn more