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It's October 1st which means it's Spina Bifida awareness month, and i'm gonna do a thing i don't usually do and talk about my condition (and the various conditions it has also left me navigating bc Spina Bifida is complex!) and there's some work that needs to be done here!
so Spina Bifida is the term for a type of neural tube disorder, in which the spine/spinal cord splits in utero affecting the development and function of the spine, spinal cord, and (sometimes) brain.
there are three general categories or types, the most common being Spina Bifida occulta or hidden Spina Bifida. this is the mildest type of Spina Bifida, lots of people may not even be aware that they have it - it sometimes shows up in tandem with another condition later in life.
the second is called meningocele, this is where there tends to be a protrusion of the meninges and spinal fluid through a vertebral opening along the spine. It is often covered with a layer of skin and may come with a range of neurological symptoms, or none at all (usually some).
the third type, the type that I have, is a rare and severe form called myelomeningocele. In this type the spinal cord/nervous system are exposed through the opening in the spine, resulting in partial or complete paralysis and various other neurological & system related symptoms.
for me, this has resulted in incomplete paraplegia, renal dysfunction, and led to a condition called hydrocephalus in which the brain cannot regulate spinal fluid properly, resulting in a buildup of CSF (cerebrospinal fluid) in the brain.
subsequently it has resulted in chronic recurring tethered cord syndrome (in which my nerves adhere to the spinal column), the development of spinal tumors, and a weird rare issue of abdominal malrotation for reasons that remain unknown to me/my doctors.
These conditions have lived with me and my body since the day that I had a body, but have drastically morphed and changed over time with both age and growth (and honestly, probably stubbornness too, baby hates the doctor).
I mention alllllllll of these things, not really because I want to discuss the intricacies of my body with you, but because I think that adult care is lacking~ and that needs to be talked about, and what better time to do that than October aka ~Spina Bifida month~.
Living through childhood with (complex) Spina Bifida is dependent on intensive and routine medical care and upkeep. Which if I'm being honest, is a lot of work!
You go to clinics, and see a number of specialists working in tandem with one another coordinating care uniquely designed for your body and the unique way SB has affected your development as well as any related disease or complication you may have as result.
For me, those complications left me with organ failure, an obscene number of surgical needs, and implanted devices like ports, stints, and a cerebral shunt. The coordination of a care plan for multiple systemic issues in my body was critical to my being alive both then and now.
But despite my health complications being a constant in my life, the care changed when I hit adulthood. And now, more than ever, as my body progressively shuts down, I'm one of many adults living with Spina Bifida without access to comprehensive or competent adult care.
The reason why is primarily that it rarely, and I mean RARELY, exists despite more and more people with complex Spina Bifida living into their 30s, 40s+ beyond. (worth noting that Spina Bifida in and of itself is not the cause of shortened lifespan, and many live plenty long)
While there are plenty of adult doctors who are familiar with the general what* of Spina Bifida, there are few well-versed in the management of complex Spina Bifida/associated conditions and a lot lot lot of people for this reason, fall out of the care they need in adulthood.
So anyway, I say this all in hopes that for this month or even for the minutes it took you to read this long and probably boring post on this one single day of this single month, we can let this sit on the forefront of our brains and take up a little space really quick.
It's my sincerest hope as a crotchety person aging weird and hard, that we continue to learn and grow about it, but also advocate for and invest in disabled people having fuller and longer lives. Surviving your childhood isn't really enough.
So anyway. If you're white and have cash and are able bodied you should throw that cash at the Spina Bifida Association (or a mutual aid or local clinic!) and help to advocate for coordinated lifetime care clinics. https://www.spinabifidaassociation.org/ways-to-donate/
Cool cool. Also a solid time for me to remind that I don't ever like to be asked "what's wrong" with me, so please don't do that ever again. It makes me very uncomfortable even when you mean well. Please and thank you. <3
Sorry not sorry this thread is very long.
