Help Phoenixville's Kylie Christine Fight Ehlers Danlos Syndrome

By KYLIE CHRISTINE WHITE

I am posting this on behalf of my daughter. She has a very real, very serious medical condition. We need to raise awareness about her condition so she can recieve adaquate medical care. Ehlers-Danlos Syndrome is the only condition in medical history to be ignored the way it has.

Help Kylie Christine Fight Ehlers Danlos Syndrome:

Kylie suffers from a rarely diagnosed genetic disease called Ehlers Danlos Syndrome. She is 20 years old, but she has already endured several lifetimes’ worth of chronic illness and widespread pain as a result of EDS.

Ehlers Danlos Syndrome is an inherited genetic collagen mutation and neurological disorder. Collagen acts as the glue that holds together all of our cells, skin, organs, and bodily systems. The faulty collagen and compression on her vertebrae, nerves, and joints caused by EDS results in a nightmarish array of diseases and symptoms. In a nutshell, Kylie needs good comprehensive care and treatment at the new Ehlers Danlos Clinic in Baltimore, MD.

• Chronic & Widespread Pain: including Articular, Musculoskeletal, Neuromuscular, & Myofascial
• Early Onset OsteoArthritis
• Scoliosis
• Joint Instability/ frequent dislocations
• Severe Asthma
• Widespread Nueropathy
• Numbness/weakness in hands, arms and legs
• Chronic Fatigue Syndrome
• Fibromyaligia
• Postural Orthostatic Tachycardia Syndrome, Dysautonomia
• Prolong QT interval
• Chronic Bronchitis, Infection.
• Pes Planus
• Sciatica
• Internal Hemorrhoids
• Ovarian cysts
• Chronic Nausea, vomiting, and IBS
• TMJ pain and dental fractures
• Tendonitis
• Heart Irregularities
• Chronic Neck, Shoulder and Back pain
• Craniocervical Instability (Difficulty holding head upright due to neck weakness)
• Anxiety
• Memory Loss (or “Brain Fog”)
• Hair Loss
• Inability to absorb nutrients/vitamins
• Weak Organs
• Restless Leg Syndrome
• Insomnia
• GI Problems (currently waiting on test results for diagnoses)
• And many more problems with the entire body...

This condition has made even the simplest everyday tasks difficult and often impossible to accomplish on her own. EDS is a progressive condition, her health is rapidly declining. Over the next couple years she will have to have several surgeries on her left shoulder, a second surgery on her right shoulder, knee and feet. As well as extensive full body physical therapy, and frequent hospital visits.

Kylie needs immediate and comprehensive clinical care and treatment.Unfortunately, due to the rarity of this disease, her physicians in Pennsylvania have been unable to treat her and lack all knowledge of EDS. This is typical for every EDS patient, however, it has proved frustrating and only worsens the outlook of the EDS sufferer. There are few experts in the US, most of whom are operating out of the new Ehlers Danlos National Foundation Center for Clinical Care and Research at the Greater Baltimore Medical Center, which opened in 2014, and currently has a 2 year waiting list! Once there, Kylie can get the comprehensive evaluation, clinical care, and orthopedics she so desperately needs, spending 3-4 days, all day, meeting with a team of expert Physicians who study EDS, obtain baseline imaging and tests, get joint support braces fitted, and comprehensive care and treatment specific for her severe case. She hopes to also meet with an EDS Fertility specialist there to determine if she can physically have children, and consult about passing on this hereditary disease. This visit will cost many thousands of dollars.

Kylie will need ongoing treatment. This includes regular monitoring through soft tissue imaging, Occupational and Physical Therapies, Pain Management Center visits, medications, custom bracing, and potential Spinal Fusion Surgery in the neck to allow her to hold her head up in the future. Her disease and symptoms are worsening faster than expected and time is of the essence to obtain treatment before permanent disability results.

Kylie’s health has proven a constant financial strain, and her current financial situation prohibits her from seeking the treatment she requires. She is unable to afford the necessary trip to the EDNF Ehlers Danlos National Foundation Center for Clinical Care and Research at the Greater Baltimore Medical Center. There is hope for her struggle.

Your donation will help Kylie get the comprehensive treatment she needs, help her qualify for future specialist treatments, and possibly avoid permanent disability. Your donation has the power to help her fight EDS and achieve a better quality of life, a life she can joyfully participate in without constant pain and illness.

Kylie is a sweet and thoughtful person, a loving girlfriend, a good friend. Despite all of the pain, she is going to school for neuropsychology. She plans to continue to study and eventually open a shelter for neglected children with disabilities. Through it all, Kylie is still the kind of person who helps others and always has a smile on her face despite the pain.

If you would rather show your support via Kylie’s Upcycled Etsy store, please peruse:
www.etsy.com/shop/radiantrelics418

To learn more about Ehlers Danlos Syndrome, please visit the Ehlers Danlos National Foundation Website
http://www.ednf.org