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SMA Australia

SMA AUSTRALIA

Phone: (03) 9796 5744

Kayla ReichelI’m a 26-year-old woman who has Spinal Muscular Atrophy Type 3. Growing up with SMA I would say was the easier part of my life. I was well supported with services and equipment but, as an adult the access to these things takes longer and as a consequence, contributes to my SMA getting worse.

Most notably, last year I began university, studying a Bachelor of Social Sciences Psychology as well as, a Mental Health Cert IV at the same time. During the last year, I have experienced my strength diminish due to the fact that I need to be able to keep up with the same demands as any other university student. This is made more challenging when you have a condition that constantly needs regular breaks but unfortunately, the able bodied world is not always able to accommodate this, so you push through the pain and the tiredness until your muscles physically give out and flop by your body, yelling at you in pain, telling you that you have over done it and as a consequence, you won’t have the strength to feed yourself or have water. You either make the decision to wait awhile to be able to eat or drink, or you swallow your pride and ask for assistance for something that you know that you can do yourself, but your body will not allow it. It is embarrassing and makes you feel like an adult baby.

Spinraza would mean the world to me. Spinraza would regain back some of the strength and independence that I have lost over the last few years. Spinraza would give my confidence back when going out by myself, as I won’t have to worry how I will eat or drink without assistance, which in most cases is not an option anymore. I would be able to pursue my career as a mental health worker while finishing my university degree without worrying if I will physically be able to handle both of those demands, without one of them suffering as a result of my diminishing strength.
Spinal Muscular Atrophy has affected my life in unique and challenging ways and I have always overcome them, but there is one thing that I can not overcome and that is complete immobilisation which Spinraza should help prevent, even if it does not show improvements for adults, the peace of mind knowing that I wouldn’t get worse is more important to me than anything else that I could gain.