SMA Columns Archives

Is Water Therapy a Luxury or Essential for People With SMA?

By

May 23, 2022

Something I look forward to every summer is swimming. Being in a pool has many health benefits for people with spinal muscular atrophy (SMA).

Patient Perspectives, SMA Columns

Emerging From the Pandemic Rekindles Familiar Fears and Anxieties

By

Alecia Maringola, SMA Contributor

May 10, 2022

As the years go by, I’m learning how living with spinal muscular atrophy (SMA) is an ongoing education.

Patient Perspectives, SMA Columns

Spring Allergies Bring More Than Common Cold Risks to Patients With SMA

By

Alecia Maringola, SMA Contributor

April 20, 2022

When living with spinal muscular atrophy (SMA), Spring allergies can mimic the common cold and cause protracted health issues.

Patient Perspectives, SMA Columns

Coping With the Aches and Pains of SMA: The Role of Pain Medication

By

Alecia Maringola, SMA Contributor

April 5, 2022

I find myself with new aches and pains as I blow out my candles each year of my life with spinal muscular atrophy (SMA).

Patient Perspectives, SMA Columns

Travel Is a Luxury Patients With SMA Don’t Have

By

Alecia Maringola, SMA Contributor

March 29, 2022

You would assume in 2022 there would be a feasible way for those of us dependent on our wheelchairs to fly on a plane. However, that isn’t the case.

Patient Perspectives, SMA Columns

How I Dread and Welcome a New Wheelchair Every Few Years

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Alecia Maringola, SMA Contributor

March 22, 2022

If less generic equipment was handed out for those with rare disabilities, it would help reduce other unnecessary costs.

Patient Perspectives, SMA Columns

Why Did My Insurance Stop Covering My Medication Without Warning?

By

Alecia Maringola, SMA Contributor

March 7, 2022

Prior to a change during my bout with COVID-19, my medication, Evrysdi® (risdiplam) for spinal muscular atrophy (SMA), was fully covered by my insurance.

CF Columns, DMD Columns, Patient Perspectives, Pompe Columns, SMA Columns

See Me, the Person, Not Me in My Wheelchair

By

Jakira Avery, MD Contributor

March 4, 2022

A lot of people see the wheelchair and automatically assume we can not do anything or they feel sorry for people like us. I do not want anyone to feel sorry for me, because I do not feel sorry for myself.