My Journey With Evrysdi

Hi friends! Today I wanted to write about my journey with Evrysdi. If you or a loved one are making the decision to get on it, but aren't sure what's best for you, this is my expereince.

Ineligible for another treatment

So, when Evrysdi was first announced, I was ecstatic! I will never ever forget the feeling of being in an "Adults talk it out" group at the 2019 Cure SMA conference. It felt like everyone I talked to was mentioning how much the treatment Spinraza had changed their lives. Earlier I had applied for it, and even went for a consult in the city, I was turned away because of my metal rods.

Looking back, it was all for the best, but in the moment, it absolutely sucked. Here I was, having the time of my life at the conference. My depression was a little bit better, and now, I felt left out of something again, just like I had been all those years of being in school. I absolutely cried a river after this meeting. It was tough. Where was I going wrong?

Declining rapidly without treatment

The most important thing to mention here was that my SMA progression was going downhill. I felt the speed of my decline moving at a pace I had never felt before in my journey. Thankfully, my neurologist was so on the ball so to speak about new things happening in the community, so she signed me up for the Evrysdi list immediately.

Starting the treatment

A few months after the announcement and insurance. I finally got my sweet, sweet Evrysdi! I will preface this by saying that only on day one I had stomach issues, but that was it. I called my neuro immediately and she told me what to take!

As of writing this, I believe that it's been about 4 whole years! Which is so crazy to think about. I remember when Cure SMA was Families of SMA and we were all talking about treatment as a fantasy. It's absolutely mind blowing to think about all the medications we have now. And I am beyond thankful for them!

Improvements in energy and quality of life

In terms of positives as thankfully I don't have any honest negatives with it. My energy is better. It can fluctuate, but overall I definitely feel like my low energy days are mostly in the past. Most importantly in the rarity when I get sick, I can bounce back like it didn't even happen where before it would knock me out for months.

But also my SMA doctor, Dr. Bach, has been so helpful in the maintenance of my SMA. Overall, I feel that I can finally thrive and live life because of my Evrysdi and Dr. Bach. And my mama (my caregiver) of course! It definitely all goes hand in hand and I must say that I never thought that I would be able to be calm about my SMA ever, so I'm extremely thankful towards the fact that I can be now.

Finally, my overall quality of life feels different in a good way. As I mentioned, my SMA was quickly declining before Evrysdi. When I finally got on it, I felt as though I could thrive. I knew that with my team and this treatment, I would get better. Being able to finally live life and know that my body wasn't really fighting hard over every single activity I did felt and still feels awesome!

Granted I still have my moments where SMA (mostly on planes if I’m completely honest) isn't happy, but, for the most part, I can finally thrive and live life. Finding comfort in the fact that for the first time ever in my life, I’m not constantly thinking about how this thing would affect my SMA. Instead, I'm able to relish in the fact of how I can finally make my SMA work for me.

Beginning to thrive despite my SMA

I will end with this. Making my SMA work for me has always been a struggle. An example of this includes when I first got my feeding back in 2022; I celebrated but also struggled. “Another thing to add with us and remember” Mom and I said. And yes, while I'm super thankful for my feeding, as I’ve discussed before, adapting with SMA is a steep climb to say the least. It's like the famous Friends quote when Ross is carrying the couch. “Pivot, PIVOT!”

To me, that's my SMA reminding me that I am a square hold in a round peg, meant to fit outside the box always. While it's not easy, throughout time, Mom and I have made the feeding fun (like putting it in a Mickey Mouse pretzel bag that smells like pretzels so it's cute and not too medical looking and we also make it work at times for us! I have it after lunch with a bit of food in my stomach because if I don't, then my stomach hurts.) and also SMA work for us/make the fun like going somewhere fun to celebrate after a doctors appointment since literally everything is an hour away from us and appointments can be a whole day affair. I even wrote about it here.

SMA isn't easy, but Evrysdi has helped so much in making it work for me, not the other way around.