Hey, Check This Out!

PostedJuly 12, 2021 · 2 minute read

Content curated with the rare disease community in mind.

By AllStripes

A man peers intently at his phone.

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‘I may be weak, but I’m strong’

A Mystery to Me is a three-part documentary series about what it’s like to live with myasthenia gravis, a rare autoimmune neuromuscular condition. “I may be weak, but I’m strong” is a phrase Vanetta Drummer-Fenton uses to let her family know how she’s feeling — and her mantra for being a mother and personal trainer living with MG. The film’s depiction of the intimate relationship between Vanetta and her own mother is especially moving.

Treating the whole person

Teonna Woolford, who lives with sickle cell disease, is the co-founder and CEO of Sickle Cell Reproductive Education Directive (SC RED). “Initially, all I wanted was to provide funding for warriors to have access to fertility preservation before undergoing curative therapies,” explains Woolford, who cites fertility struggles after a bone marrow transplant as the inspiration for founding SC RED. She joined together with Dr. Lydia Pecker and Dr. Kim Smith-Whitley to advocate for and ensure “high quality reproductive health care for individuals living with all types of sickle cell disease.”

The only difference

Parents of a son with autism describe one of their most difficult decisions in “Unconditional Love,” a This American Life episode from 2006. When people tell blogger Dave Royko they “couldn’t” handle the challenges his son Ben faces, he thinks, “You would be doing the same thing. The only difference is we have to do it.”

Paths to parenthood

In an honest, vivid account, Alyssa describes her four pregnancies and what it’s like to parent her three children. “I’m happy to talk to people who are in a similar position or close friends,” she explains. “But when strangers ask too many questions, you’re like, Lady, I’m just living my life in a grocery store. If you ask Tommy why he needs a wheelchair, it’s like asking him why someone has brown hair.”

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