Life is a reflection of our attitude, and we can learn a thing or two from Alena Galan, a young woman who’s living the dream as a college freshman, hosting a student-run radio show, and beating all the odds of her mucopolysaccharidosis type IV (MPS VI) diagnosis.
Alena was born in Russia and adopted around age three. But her medical issues weren’t defined until she was settled in with her new family in the US. Doctors said Alena needed an enzyme replacement treatment that was rare.
Mucopolysaccharidosis type VI (MPS VI), also known as Maroteaux-Lamy syndrome, is a progressive condition that causes many tissues and organs to enlarge and become inflamed or scarred.
Skeletal abnormalities are also common in this condition. The rate at which symptoms worsen varies among affected individuals. But there’s hope.
In 2005, the U.S. Food and Drug Administration (FDA) approved the orphan drug Naglazyme® (galsulfase) for the treatment of individuals with Maroteaux-Lamy syndrome.
Naglazyme is an enzyme replacement therapy (ERT), a therapy in which the missing or inactive enzyme is replaced with a genetically engineered (recombinant) version.
For more information, contact:
BioMarin Pharmaceutical, Inc.
105 Digital Drive
Novato, CA 94949
Telephone: (415) 506-6700
Fax: (415) 382-7889
Patient & Physician Support: (866) 906-6100
Make or Break
I needed to read Alena’s story, and it couldn’t have come at a better time. The holidays are over and the promise of the new year is buzzing.
A new mantra may be in order, and I’m thinking of a good but easy one to adapt and apply:
What We Think, We Become.
Basically, what we think is what we get. I know it sounds simple, but the truth is, our attitude controls our life. The good news? We control our attitude. Have a positive, joyful attitude, and we may have positive, joyful results.
Easy enough and worth a shot!