Happy Friday Everybody!
This week we’re spotlighting three patient stories: an ALD patient full of optimism and love, a beauty pageant contestant with a noble goal, and a woman with cystinosis breaking down the complexities of rare dating. We also have an FDA approval affecting TSC patients.
Sit back and enjoy this week’s Editor’s Choice.
This Man is Speaking Out About What it’s Really Like to Live With ALD
Michael, a devoted husband, father, and grandad, was diagnosed with adrenoleukodystrophy two years ago. Although the genetic disease is frightening, he finds strength and optimism living life with the people he loves.
Read about it here.
Devan Demmons and Service Dog Duke Make Pageant History while Raising Awareness about Dysautonomia
Devan, a dysautonomia patient, is competing in a pageant this weekend with her service dog. After struggling through a dismissive medical system to find her diagnosis, Devan wants to make the world more aware of dysautonomia so that other people can find help more easily.
Learn more about her story here.
FDA Approves Afinitor for Treating Seizures in TSC Patients
Hey TSC patients and loved ones! Have you heard about this new treatment option?
Read about it here.
Single and Content, Living with Cystinosis
When you live with a rare disease, it factors into your love life in all sorts of way. PW Contributor Rebekah Palmer gives her take here here.
