Screaming in the shower - patients are dying from ignorance.

For the love of GOD - please help aHUS Awareness!

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Hey there, RDG readers - Candidly today, I’m upset.

Above in this photo are faces of people with aHUS at the recent conference. We all have challenging stories of survival. There is no diagnostic test for our disease - it purely a game of ruling out other diseases and some doctor taking a chance and giving us the treatment.

That’s my story - a doctor said “she might have this and if she does, she needs the med now.” They took a risk and I’m alive.

And it ONLY happens when a doctor is aware of this disease.

And my heart breaks for all the angels not pictured.

A patient died yesterday in a hospital because the team was unaware and ill-equipped just two hours from my house.

The community did its best to help connect the family to specialists - but it was too late.

We must do more. I must do more. Please help us.

If you know someone at a hospital, please connect me or send them information on this disease - adding there is an AMAZING treatment.

I was almost dead so many times and you all see me - I’m thriving despite it all.

TOGETHER WE WILL SAVE LIVES.

But first some potential good news:

Healthcare issues are on the forefront of our policy makers minds these days! One bill I’m very excited about is a bipartisan bill to break up Big Medicine!

This benefits every single one of us in the states.

The Warren-Hawley co-sponsored legislation is something we should all get our reps behind. It targets some of the most frustrating issues in Health. The bill “proposes prohibiting parent companies from owning a medical provider or management services organization and a PBM or insurer. It also proposes prohibiting parent companies of prescription drug or medical device wholesalers from owning a medical provider or management services organization.”

This would lead to end some of the double dipping from these huge companies at our expense, that raises the prices.

I promise to write more about Pharmacy Benefit Mangers(PBM) soon. But basically the bill targets massive health conglomerates like United Health and CVS which control multiple parts of the healthcare chain. They own BOTH SIDES of the transactions.

They own the pharmacy, the doctors, the insurance, and the middleman - and they charge us at every turn.

PBMs negotiate the drug benefits AND determine which drugs are covered by insurance companies - and they benefit MOST from higher drug prices.

Companies like GOODRx and the new TRUMPRx are trying to help but they are just bandaids on a system that is broken.

Let your rep know, you want these companies to stop controlling the market:

Find your rep’s contact here -

https://www.house.gov/representatives/find-your-representative

https://www.senate.gov/senators/senators-contact.htm (you’ll have two per state)

Screaming in the Shower

Yesterday was too much.

Awareness efforts for aHUS are at a standstill here in the states. And while I see a lot of individuals who care, there needs to be a bigger push now.

In the shower last night, I cried because I know aHUS deaths are happening all over the country. The disease is getting missed - chocked up to kidney failure, heart attack, clots, hemorrhage during birth - when it’s staring doctors in the face.

I also hate all diseases and James Van Der Beek’s death hit home.

And what hurts so much - when people don’t get treatment soon enough to survive. Especially when a treatment exists.

Like mine.

There is no diagnostic test for aHUS or Complement Mediated Thrombotic Microangiopathy - don’t get me started on the name controversy that’s confusing the waters.

As I mentioned, we had a death in the community yesterday. As well as constantly people frustrated with uninformed doctors.

A dream: a widely available diagnostic test that can confirm a diagnosis of aHUS and/or confirm that the disease is under control or not under control. There are scientific labs that have proposed a test, but these tests are often too siloed or inconsistent.

I want to advocate for studies on this - but in the meantime, AWARENESS MATTERS.

This is my call - it’s RARE DISEASE MONTH - please share this disease and tag medical professionals. Please connect with hospital physicians and staff.

Patients are dying of aHUS in information darkness when a treatment exists.

Please who can help? Who do you know? Who can you connect me to? I’ll message with anyone or talk to any team.

Outcomes are miracles when the drug is given in time - but if a team is unaware, people are dying.

And I’m not making this up. A five year study shows hospitals with a Thrombotic Microangiopathy (TMA) Team - they find it more. This is PROVEN awareness. If doctors know this exists, people survive and get treatment.

These are deaths of ignorance as much as disease. Especially when a treatment exists.

Funding is needed for better awareness, but in the meantime - people can help. Anyone who cares is a miracle.

How can you help? Yes, you. How can you help with awareness?

IN CASE YOU MISSED IT

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If you’re new here and wondering, “what happened to this lady?” read:

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. NOTE: This is not intended to replace actual medical guidance. Please consult your doctors on your individual challenges and situations. Please talk to your clinicians before adjusting any of your care protocols.

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