We need more research on reproductive health in women with SMA
For years, I thought I'd never have a menstrual cycle
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By the time I was 19, I believed I had escaped my reproductive cycle. In fact, I had developed a superiority complex about it.
While my friends complained about cramps and cravings, I laughed in their faces. It’s not like I was reading studies on young women with SMA. I didn’t know what a female body with this rare disease was capable of. Hair had grown in places I didn’t know it could, but my chest hadn’t grown enough to necessitate even a training bra. My frame was too thin for me to develop the hips that a physiotherapist said I would.
I was nearly 20. If all you got was light staining once at 8 and once at 14, but not a drop of blood since, wouldn’t you arrive at the same conclusion?
Others might’ve panicked at the realization. I didn’t. Bluntly speaking, barrenness wasn’t the worst fate in the world to me. Whether it’s because of or despite my being the eldest of three kids, I figured I wasn’t naturally maternal anyway. The closest I came to having “maternal instincts,” if you could call it that, was the brief period of time I preferred watching my then-newborn brother sleep over anything else.
Plus, SMA is expensive. Kids are expensive. Even if I wanted kids, I didn’t think I could ever afford to have them. I still don’t. Not without help from public aid or a rich spouse.
“Maybe my body knows it’s too weak and bent to reproduce,” I thought. My scoliosis, after all, was so severe that my heart had moved from my left side to my right. “That’s OK. No period ever seems like a sweet exchange for no babies.”
Oh, reader. How I was humbled.
Valid kinds of normal
I apologized to the friends I had laughed at as soon as I was cleaned up.
It didn’t occur to me or anyone around me that I could have just been an exceptionally late bloomer. But, boy, one fateful month, the blood bloomed shockingly on my clothes and the pillow I was sitting on. My caregiver must’ve spent over an hour washing up and thoroughly checking whether she had missed a spot on me or the various fabrics.
I was absolutely miserable in the days that followed. Everything hurt. The mood swings swung like a pendulum. Nausea ruined my appetite. Wearing pads felt itchy and hot. I hoped what was happening to me was a fluke.
My parents and caregiver tried to convince me that menstruation was a good thing. I understood their arguments: The estrogen produced during a regular menstrual cycle has benefits. The list includes bone health, skin health, and blood circulation. If you have attention-deficit/hyperactivity disorder, like I do, some scientists believe it may help regulate your cognitive function.
Nevertheless, I glared at anyone who said, “This shows you’re normal! You can have kids now!”
Not having a period was my normal. It had felt like my body and I were in agreement: no need to suffer the downsides of a reproductive system if you aren’t going to — and likely can’t — use all of the upsides. Having a period was like living through a broken promise, a disconnect in a relationship. I resented the idea that I wasn’t “normal” before.
Upsides and downsides
It’s taken years for me to make peace with my body.
When I first started getting my period, it was like my brain didn’t recognize the exterior it was encased in. It wanted out. I made my mum take me to a gynecologist. Unfortunately, the only solution proposed was a prescription for an oral contraceptive to manually regulate my cycle, which comes with a risk of stroke for nonambulatory SMA patients.
I didn’t want the risk, so learning to live with blood and pain it was. Symptom management was a familiar concept to me, thanks to SMA and chronic pain; over time, I learned to anticipate my cycle’s symptoms and prepare for them. Zofran (ondansetron) for the nausea was my new best friend.
Evrysdi (risdiplam) helps, too, actually; the disease-modifying therapy has strengthened me enough that I no longer get cold sweats from the strain of my period. It’s another reason I’ll always advocate for universal access to rare disease treatments.
Maybe I’ll want kids one day. I don’t know. At 27, my adult brain, unlike my teenage brain, believes I should never say never. Maybe I’ll marry into money. I could always hire a surrogate to carry my child if my body insists on releasing eggs and I’m unable to get pregnant.
What I do know is that some women with SMA have biological kids, and we need more discussions and research about how the condition affects patients’ reproductive health.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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