Help Jen Get Surgery to Stop Debilitating DisorderThe Condition
Jennifer is a painter in her early 30s, whose friends and family know her as a funny, deeply thoughtful, and sympathetic person. She began noticing alarming symptoms several years ago, but doctors only recently realized something serious was lurking under the symptoms, and it has now grown urgent
Photo: Jen (on the right) with her three sisters
Unfortunately, Jen’s disease is so rare that doctors did not correctly identify it until she suffered heart arrhythmia (irregular heartbeat) and fell down while at work. UBC researchers finally led her to doctors who identified her condition as a degenerative spinal deformity called idiopathic Syringomyelia
. It is likely she’s had this disorder her whole life, but it has been escalating over time.
Syringomyelia causes a cavity in the spine to fill with fluid, creating a large cyst called a syrinx. As the growth expands, it leaks outside the spine, pressing on the nerves and killing nerves cells
as it grows. It leads to loss of mobility, loss of sensation, and other painful effects
. Although the syrinx usually grows in one zone of the spine, Jen’s syrinx runs the whole length of her spinal cord and will continue to grow outward and cause nerve damage throughout her body.
Photo: Jen with her son
The syrinx has already caused loss of feeling and tremors in Jen’s hands
. She has been injured as a result of sensitivity loss and has lost strength and sensation in her limbs, struggling some days with walking
. She experiences heart and digestive
issues, has narcolepsy-like symptoms
due to pressure on her nervous system, and even trouble swallowing food
Jen has lost the ability to hold her paintbrush on some days
, which she tapes to her hand when she is unable to grip things. Each time Jen loses feelings in her limbs, she is afraid this time it won’t come back. Doctors have recommended grief counselling in the face of few treatment options.
Her ability to support her family financially and care for her child have been severely impacted.
Photo: Jen in her studioTreatment in Canada (the bad news)
The only treatment available in Canada is a high-risk surgery with a very low success rate,
where a shunt is inserted in the spinal cord to try to drain the fluid. It is also highly invasive.
The operation carries high risks of immediate paralysis during surgery
, infection, the shunts clogging over time, and need for removal and replacement through further surgeries.
A top surgeon in Canada cancelled Jen's operation on the day of surgery
after seeing how invasive the syrinx has grown. He determined he cannot remove it without a high risk of paralysis, opting to observe the growth of the cyst over time. Although the ‘wait and see approach’ avoids surgical risks, it will end in further loss of mobility
. Any nerve damage that happens while Jen waits is permanent, so getting treatment sooner rather than later is vital. Many people with Syringomyelia end up paralyzed, and at that point surgery will never reverse the damage.There is Good News!
Jen recently found out she is a candidate for a patented procedure performed
at the Chiari and Syringomyelia Institute
in Barcelona, the only centre dedicated to researching and treating this disease. The institute has developed a cutting-edge, minimally invasive surgery called a ‘filum terminale’ to stop the growth of the syrinx. By separating two pieces of tissue at the base of the spinal cord through a special procedure, the surgery allows the spine to ease into place, while the cavity filled with fluid naturally drains and closes itself.
Photo: Jen's wall of paintings is enjoyed at Outsider Arts Festival in Vancouver in 2018
This surgery has a high success rate and low risk
, but due to its patented status, it is not available in Canada
(or anywhere except the Chiari and Syringomyelia Institute).
The ‘filum terminale’ procedure could be life changing for Jen
, to alleviate pain, stop the symptoms caused by the pressure of the cyst expanding, and halt further nerve damage and loss of mobility
. There is also a good chance the surgery would reverse her lifelong scoliosis (an S-shaped curvature of the spine), which is also connected to syringomyelia.The Obstacle
The biggest obstacle to Jen’s treatment is that it is located out of country, and therefore is not covered by Canadian medical
funding. Patients suffering from this rare but serious disease have to pay for treatment out-of-pocket
. The full treatment at the clinic costs roughly $35,000 CAD, not including travel to Barcelona for Jen and a companion to assist her home. It also does not cover accommodation while there or the mandatory 10-day recovery period before being able to travel home.
Jen and her family are faced with a huge financial burden or the option of allowing her condition to progress without treatment. The family has already spent many years struggling to recover after a car accident left Jen’s husband Darin seriously injured.
Photo: Jen with her husband, Darin
Jen's Go Fund Me campaign seeks to meet the costs of her treatment.
Jen is working to raise as much money as she can, and her family is working to support her surgery as much as they can, although they are not able to independently shoulder the cost, either.
Because the syrinx continues to threaten her mobility irreversibly every day, Jen needs to reach out for help now. The cost of this treatment is astronomical, and financial contributions of any size would mean so much to all of us and help Jen carry the burden. Depending on her access to this treatment, Jen’s quality of life will be dramatically different. Please help if you can! Jen's friends and family thank you deeply.
Photo: Colourful prints of Jen's artwork are spread out on the studio floor