Grace's Road Back to Health

Hello everyone, this is to help cover medical costs for my amazing friend, Grace, who has been diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS) and Occult Tethered Cord Syndrome (OTCS). I’ll allow Grace and her fiance, Claudia, to explain more about the long road they have been on:

To our friends and family,

In March of 2022, a series of trips to a variety of emergency rooms led to Grace getting diagnosed with IIH, or Idiopathic Intracranial Hypertension, also known as pseudotumor cerebri or “false tumor”. This began a long road, filled with time off from work and many doctors and hospital visits. Many other diagnoses followed and, eventually, Hypermobile Ehlers-Danlos Syndrome or hEDS (a connective tissue disorder) was discovered as the root cause. This led to Grace taking another leave from work due to interference in daily functioning and a slew of specialist appointments, leading to mounting medical costs and wage loss. To this day, over a year later, Grace has had to reduce her work hours due to symptoms.

hEDS is a genetic collagen disorder with no cure and with many possible comorbid conditions. Collagen is in every part of the body, acting as glue holding together each system. When the glue is fragile, it causes widespread, multi-system, and often mysterious symptoms. Symptoms for hEDS include chronic pain, fatigue, joint hypermobility, subluxations, dislocation without trauma, and much more. Furthermore, hEDS often is accompanied by, and contributes to, inappropriate immune response manifesting as MCAS, dysfunction of autonomic nervous system resulting in dysautonomia/POTS, and structural neurological disorders including chiari malformation, craniocervical instability, occult tethered cord syndrome, and cerebrospinal fluid dysregulation.

As you can imagine, these wide ranging symptoms lead to unpredictable day to day functioning. This impacts both caring for herself, her home, and her ability to work as a mental health therapist. This exacts a physical, mental, and emotional toll, on top of the financial burden. Throughout the past year, Grace and her fiance, Claudia, have traveled to countless specialists both near and far, to find providers who understand the impact and atypical presentations of comorbid conditions of hEDS.

In December 2022, Grace and Claudia traveled to Providence, Rhode Island to consult with a hEDS neurosurgeon who diagnosed Occult Tethered Cord Syndrome and recommended spinal cord surgery to repair. Tethered Cord in hEDS patients presents differently than it does in non-EDS patients, and therefore requires an EDS specialist both for diagnosis and surgery. The hEDS increases several risk factors for surgery and so it is imperative that this surgery be performed by someone fully familiar with EDS. Tethered Cord is a condition where the spinal cord is anchored by abnormal tissue growths which cause physical symptoms, some of which could become permanent issues. This surgery will hopefully improve chronic issues of neurological and urological dysfunction, which cause difficulties in engaging in both daily activities of living and enjoyable activities that require significant walking, moving, or standing.

The surgery is scheduled for May 23, 2023, which still leaves a lot of time for just managing symptoms, which is difficult due to the variance in symptoms and impairment on a day to day basis. Grace will need to stay in Rhode Island near the hospital for two weeks after the surgery to recover, and won’t be able to work during the recovery period. Once the Tethered Cord surgery is complete the doctor will determine whether most of Grace’s symptoms were caused by the tethered cord or not, then we can figure out the next steps. The next steps would include testing and follow ups with hEDS specialists in the fields of neurology, neurosurgery, neuro-ophthalmology to assess and treat comorbid conditions often associated with hEDS including cranio-cervical instability, intracranial hyper or hypotension, cerebrospinal leaks, and chiari malformation. So while the surgery will hopefully be a big step forward, Grace still has a long road ahead.

Despite the difficulty of the last year, we have been lucky to have wonderful people providing support and love to us. We are truly grateful for each and every donation.

With gratitude,

Grace & Claudia

This fundraiser will hopefully cover the costs of the surgery, stay in Rhode Island, and other medical expenses. We don’t currently know the exact cost of the surgery and the goal will be updated to reflect that once we do. Thank you all!