Celebrating Hope: One Patient’s Journey with a Rare, Debilitating Disease – Interview

Celebrating Hope: One Patient’s Journey with a Rare, Debilitating Disease – Interview

Until December 2016, there were no treatment options available for the nearly 9,000 individuals in the United States living with a rare disease called spinal muscular atrophy (SMA).[1] Individuals with SMA often experienced symptoms related to the deteriorating effects of the condition, which may include the gradual onset of muscle weakness that can lead to the inability to stand or walk independently.[2]

With scientific and treatment advances, patients of all ages have now been given hope. While commonly thought of as a pediatric disease, today 65% of individuals living with SMA are adults. One adult living with SMA is 28-year-old Kailey McCallister.[3]

Despite being diagnosed with SMA at an early age, Kailey refused to allow the disease to keep her from having a positive outlook on her life and is eager to share her story.

Join me in a recent interview with Kailey and also Dr. Margaret Frey, Kailey’s neurologist.   Dr. Frey specializes in SMA at Memorial Healthcare in Michigan.  She discusses the medical advances and initiatives that have helped the community fight back against this progressive disease and Kailey’s able to tell her story also.

See the entire interview here:

For more information, go to www.spinraza.com.

Bios

Dr. Margaret Frey

Dr. Margaret Frey, DO, is a neurologist who provides a wide range of neurology services at the Memorial Neurological Institute and Center for Multiple Sclerosis. Dr. Frey graduated from Michigan State University (MSU) with a doctorate in osteopathic medicine; she performed her residency in Neurology and was awarded a fellowship in Neurophysiology. Board-certified in Neurology, Dr. Frey specializes in the diagnosis and treatment of epilepsy. Dr. Frey is also the Medical Director of the Muscular Dystrophy Care Center at Memorial Healthcare, located in Owosso, Michigan.

Kailey McCallister

Kailey McCallister is 28 years old and living with SMA Type 3. She is one of three sisters, all of whom were diagnosed with SMA. Unfortunately, her younger sister passed away at the age of 6 before SMA treatment options were available. As an adult, she shares her story and experience discussing what SMA medical and treatment advancements mean to her.


[1] Lally C, Jones C, Farwell W, et al. Indirect estimation of the prevalence of spinal muscular atrophy Type I, II, and III in the United States. Orphanet Journal of Rare Diseases. 2017;12:175.

[2] Lefebvre S, Burglen L, Reboullet S, et al. Identification and characterization of a spinal muscular atrophy-determining gene. Cell. 1995;80(1):155-165.

[3] Biogen. Data on file.

Interview is courtesy: Biogen

 

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MMN Interview Blogger- Cynthia Tait

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Cynthia Tait

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