Jamal Whittaker SPINAL SURGERY for Ehlers-Danlos

My name is Samantha Bruce, and this is my incredible and very precious friend Jamal Whittaker.

She is 40 years old, has hypermobile Ehlers Danlos syndrome (hEDS), is part of a lovingly supportive family of four, and URGENTLY needs Tethered Spinal Cord release surgery.

Ehlers Danlos Syndrome (EDS) is a rare, uncurable, heritable connective tissue disorder, with 13 subtypes. For most people, connective tissue is the glue that holds everything together. It can be found almost anywhere in the body; skin, muscles, ligaments, blood vessels, organs, gums, eyes, etc. For people with EDS, this results in: joint instability, hyper-mobility, frequent dislocations and/or subluxations, dysfunction of the autonomic nervous system, chronic pain, fatigue, fragile skin/muscles/ligaments, migraines, erratic blood pressure, musculoskeletal complications, and MANY other challenges/comorbidities.

 

hEDS has affected all aspects of her life. She suffer’s unimaginably each day. It’s a nearly invisible thief that’s stolen so much from my friend and her family. The long road to diagnosis was paved with doctor after doctor dismissing it as nothing, then being bounced from specialist to specialist, getting kicked out of a pain management clinic for refusing opioid treatment, and constantly hearing “I’m sorry, there’s nothing we can do for you”. She left many doctors offices in tears of anger, frustration, and regret feeling that she was causing her family so much financial and emotional instability.

Jamal FINALLY received her official hEDS diagnosis recently from a leading neurosurgeon experienced in EDS, Professor and Chair of Neurosurgery at MUSC, Dr. Sunil Patel. Her journey started in 2017. At that point she thought she could fix whatever was wrong and go back to work and a normal life. She’s made it this far, not only with the support of family and friends, but also with an incredible tenacity for finding the truth (and more googling than a person normally does lol). In 2019 a geneticist gave her an HSD diagnosis (Hypermobility Spectrum Disorder) which lead down a path of improper treatment. Unfortunately, although under the same umbrella, HSD isn’t as well recognized as the already rare and misunderstood Ehlers Danlos Syndrome. Due to her extensive research she gained the knowledge and self advocacy skills to reach the proper physicians. At her most recent neurosurgery appointment at MUSC, she was diagnosed with spinal instability including Atlanto-Axial Instability (AAI), Cranio Cevical Instability (CCI), and Tethered Cord Syndrome (TCS).

Her TCS is caused by thickened/tight filum terminale (a delicate filament near the tailbone) which is “stuck” in the spinal canal, limiting movement of the spinal cord within the spinal column. This condition causes an abnormal stretching of the spinal cord exacerbating instability/degeneration. Having AAI/CCI means that the skull is unstable on top of the spine, causing brain stem compression. In Jamal’s case there is instability throughout the rest of her spine as well. She urgently needs Tethered Spinal Cord release surgery in hope of avoiding spinal fusion from the craniocervical junction to the bottom of her neck.

The release surgery is done by removing part of the filum terminale at the base of the lumbar spine. The surgery itself will be performed in Charleston, SC by Dr. Patel, and can take several hours. In order for her to get this surgery, the family will have 4.5 hour one way trip from their home near Travelers Rest, SC. They will have to stay 10-14 days in Charleston to complete pre-op, actual surgery, a few day hospital stay, and then post-op recovery/evaluation and release to return home. This will be followed by extensive physical therapy, new imaging and reevaluation of the CCI/AAI situation (so, at least one more pressing trip to Charleston). Although everyone is trying to stay positive, the potential for additional spinal surgery remains high.

Her husband, Dwight, has been the family of four’s sole financial provider since she had to quit working; only asking for help when every other option was exhausted (although both of their families have always done everything possible to help when needed). He’s paying for the highest insurance plan his company offers (about $750 a month currently), to offset the constant doctors visits/failed procedures/surgeries/imaging/medications/physical therapy/etc. This doesn’t cover copayments, out of pocket deductibles, or the many other financial hurdles associated with chronic illness.

She pushed TCS release out until the children’s summer break, probably mid to late June (MUSC wanted to schedule for the beginning of May). This was in order to avoid jeopardizing the kids academic lives due to extended time away from home. It will also allow the family time to financially prepare for this complicated and unexpected situation.

We are waiting for a quote from insurance for the actual surgery cost. Their out of pocket max is about $7000, although unfortunately it’s never quite that simple with insurance companies/surgeries/and hospital stays when calculating the cost. There will also be traveling expenses, loss of wages for Dwight due to excessive time off work for travel, her recovery, and help caring for the kids during this time. With the proper diagnosis, she will have to restart the disability process as well. I will keep everyone updated as we receive more information regarding the breakdown of actual costs.

All of this is just too heavy a burden to ask of their surviving parents. This is my heart felt appeal to help Jamal and her family. I’ve watched her give her all for others, in whatever capacity she can. Now I’m asking anyone able to donate or share. Please, please…..give this incredible mom and family the chance for a better life!

Even the smallest amount given can make a big difference! She asks everyone to only give if you are truly able, and if not sharing this is just as important and greatly appreciated!!

From the bottom of our hearts; with all the light, love, and warmth - we thank you!!!!