Spinal Muscular Atrophy: What is Palliative Care?

Many people assume that palliative care is just for the terminally ill who only have a few weeks left to live, but that’s wrong: palliative care if for anyone who has an illness which cannot be cured.

What’s it like living with a degenerative condition? Two patients tell their stories.

While there’s no cure for many chronic conditions (including spinal muscular atrophy), there are therapies that can treat symptoms as well as improve the patient’s quality of life. This is palliative care.

Symptoms of SMA can include pain, fatigue, shortness of breath, constipation, nausea, loss of appetite, insomnia, and depression. These symptoms can all be treated with palliative care.

In addition, many SMA patients will need specialized equipment to help them move around, eat, breathe, and sleep. The provision of these items and training in how to use them properly all comes under the umbrella of palliative care.

Palliative care for people with spinal muscular atrophy is a multi-team effort. It requires doctors, nurses, nutritionists, physical therapists, and occupational therapists who all work together to ensure the patient has the best quality of life and has all the necessary equipment to make their life and their family’s lives easier.

Find out about the SMA patient who got his wish of a roll-in shower.

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 another 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.

3 comments

  1. Julie Frame says:

    Can you help my granddaughter in Gainesville Florida? She moved there with her family 2 years ago and is attending Santa Fe College. She has SMA type 2. Her mother has had a horrible time trying to find Palliative Care. Do you have any suggestions. Thank you.

    • Tim Bossie says:

      We are sorry to hear about your granddaughter Julie. It is always difficult to move into a new place where you do not know anyone or where to get help. We would suggest trying to contact any local support groups. You might be able to find these through the hospitals in the area. Contact doctors offices and ask if they know of any type of home care groups that specialize in SMA. We wish you all the best in this.

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