Alison Laird is 42 years old, and she has GNE myopathy.
The disorder causes the progressive deterioration of muscles. It eventually causes immobility. For anyone, the news of this diagnosis is devastating.
But according to the Daily Record, for Alison, not only did it steal her physical strength, it stole her passion.
Alison was a personal trainer. She directed clients for eight years on the best ways to increase your fitness and physical capabilities. She is passionate about health, and always made exercise a priority. She ran marathons and loved lifting weights.
Now she can’t even lift a gallon of milk.
But it wasn’t simply the deteriorating strength that was so disheartening for Alison, it was all of the other capabilities it took from her. She can’t lift her grandson, who’s four, into her arms to hug him. And that’s one of the saddest things of all.
It really puts things into perspective: GNE myopathy disrupted her entire career, but she realized the most important thing was the moments she was missing with her family.
That being said, a hug is certainly not the only way to show love. Alison has found ways to work around the disease, spend time with her family, and spread endless positivity. She’s begun fundraising for the disorder, working for the greater good of all of those currently affected by the disease, and who could be affected in the future.
While GNE myopathy is genetic, it doesn’t appear till early adulthood. The goal is to find a cure, eliminate misdiagnosis (which happens all too frequently), and stop the illness before it even gets that far.
While GNE myopathy decreased Alison’s physical strength, it has made her stronger in every other aspect of life.
You can read more about her story on the Daily Record by clicking here!
What do you think of Alison and her strength? How have you learned to cope with your rare disease? Share your thoughts with the Patient Worthy community!