It's Rare Disease Month

Facts on Rare Diseases

Hi Substack family,

It’s Rare Disease Month. Please consider sharing this substack and help bring awareness to Atypical Hemolytic Uremic Syndrome.

Most people have never heard of it, so ANY awareness effort is truly helping people. The disease was once categorized as ultra-rare and now it’s just regular rare due to increased awareness- which, to me, just means less folks are dying undiagnosed.

Especially share with the doctors and midwives in your life.

Love, Tay

Facts on Rare Disease

A disease is rare when it affects one in two thousand people.

300 million people live with a diagnosed rare disease. That’s under 6% of the population.

Folks with rare diseases are challenged from the start, because diagnosis can be extremely difficult- so awareness efforts are vital.

Additionally, when any population is niche, advocacy is even more important.

My disease, for example, has a treatment, but it’s considered an orphan drug. This means the pharmaceutical company gets special permission from the government to set profoundly high prices for the drug. They argue the drug isn’t profitable otherwise. But the cost is so expensive, delays or roadblocks to care can result.

Entire countries have blocked the treatment due to cost.

Tragically, I just read a post where a young man with aHUS lost insurance, delaying treatment, resulting in his death.

In short, people are dying despite an existing treatment in the United States and across the globe.

It doesn’t have to be this way.

Additionally, mental health support is necessary for people with these diseases. Being isolated in disease can feel profoundly hopeless. I deeply believe building community and solid mental health support can improve outcomes. The body and the brain are not separate entities.

For every subscriber, you are the change. Thank you for holding space with me on this journey.

For more on rare disease: https://www.rarediseaseday.org/what-is-a-rare-disease/

KNOW RARE Influencer Partnership

In my partnership with the organization KNOW RARE: here is a video on How To Support Someone with a Rare Disease.

@taylorcoffmanmade@Know Rare prompt: what advice would you give to folks to support a friend of someone w a rare disease or caregiver. More tips here: @Taylor Coffman my story: @Taylor Coffman @Taylor Coffman #raredisease #chronicillness #ahus #atypicalhus #atypicalhemolyticuremicsyndrome #patientadvocate

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If you’re new here and wondering, “what happened to this lady?” read The Fighter Still Remains Part 1. xo

I started writing this when I was on dialysis. It’s intended to be both memoir and a practical tool to help folks who might be going through something similar or those caregivers and family supporting someone with a challenging diagnosis. I hope to include excerpts here as I write. NOTE: This is not intended to replace actual medical guidance. Please consult your doctors on your individual challenges and situations. Also names have been changed for most of my medical staff.

Thank you to Roy Lenn and Richard Burwick for your founding level donation.