It’s not uncommon for patients to be disbelieved before eventually finding a proper diagnosis and effective treatment for spontaneous intracranial hypotension due to a spinal cerebrospinal fluid (CSF) leak. When Jack became ill at age 14, his parents Jody and Burke pushed hard for his symptoms to be taken seriously. Watch Burke’s story of being a caregiver for a child with a spinal CSF leak.
On coping together
“We had a lot of support from family and friends who would help us out, bring us food, help with those kinds of things. My wife and I just both tried to do as much research as we could, because we weren’t getting answers and he wasn’t getting better. I think that was super important. We were just kind of putting our full selves into trying to figure out what was going on. We put things out on social media and got some answers there.”
On the frustration of trying to explain to others
“A lot of people don’t really understand it. You know, you say that you had a headache for a while, and people just think, oh, it’s a little bit of a headache, and so they maybe diminish the experience a little bit. So just trying to get people to understand what it was and the severity of it, and how it impacted our son Jack; I think that was probably the hardest thing to communicate.”
On standing your ground
“We had a lot of great medical care along the way, but also quite a few instances of people pushing back on us and almost questioning us as parents, questioning Jack whether, you know, we were abusing him and causing his headaches, things like that. So, I mean, you really have to stay strong. You know your child best.”
On the future
“Every now and then he will get a minor headache and we start to wonder if it’s going to come back but so far it’s just been a regular headache. Hopefully it just stays like that for the rest of his life.”
The team at Spinal CSF Leak Foundation extends our appreciation and thanks to the family, physicians, and staff who assisted with this feature story, and to all those working so hard to help patients and raise awareness.
Further reading/viewing:
Resources for caregivers:
Find a Therapist
via the Anxiety and Depression Society of America
The National Alliance for Caregiving
Offering resources, information, and support for caregivers.
Rare Caregiver Respite Program from NORD
This first-of-its-kind assistance program is designed for caregivers of a child or adult diagnosed with a rare disorder.
Caregiver Support from USA.gov
Offering federal, state, and local resources for caregivers.