aplastic anemia

I'm 80.

Um, with the COVID vaccine, I know it's a bit, bit old now, but I'm, I'm interested in it because I got aplastic anemia to do with the vaccine.

So I just wanted to pass this one to you that in the, after COVID had gone, in the developed countries like Australia, the death rate remained still high, whereas, uh, in, in the underdeveloped countries where they didn't have the COVID vaccine, the death rate returned to normal.

So there's, to me, there's a connection between [coughs] between the COVID and the death rate, l- and they d- they didn't put it down to COVID.

Now, I, I got aplastic anemia, and, uh, I looked up the, [coughs] you know, the AI and stuff.

I've, I've got a really smart friend.

I come from computing, and he helped me, but he, he probably [chuckles] he's the inspiration for it all.

Taxes and fees apply.

Are you wondering what college football and aplastic anemia have to do with one another? Well, I don't wanna make you wait anymore.

Let me tell you.

LSU fans, I especially need you to listen to this one.

When Ryan Soileau's son Henry became dependent on blood transfusions because of aplastic anemia, their family spent years in and out of the children's hospital.

And somewhere along the way, Ryan was inspired by a piece of LSU tradition, and he brought it inside his children's hospital.

So if you've ever been to Tiger Stadium, apparently you know about the Win Bar.

What did they discover during that hospital stay or shortly after?

[chuckles] Well, I'm 64.

I was diagnosed with aplastic anemia about 10 years ago, and that later turned on t- into PNH or d- evolved into PNH, which I, we'll discuss in more detail, I'm sure.

I was an attorney when I developed aplastic anemia, but since then, I've been primarily on disability and working within the constraints of the Social Security system.

As a kid, I wanted to be an entomologist, so I had lots of giant millipedes and big long-horned beetles and tarantulas and that's now in my past.

But sometimes I wonder what life would've been if I'd pursued that career instead of becoming an attorney.

There were some adjustments that had to happen, but there was a junior entomological society in my city, and I became a member and, and they kind of went with the flow.

That's awesome.

You know, Elise, as I mentioned just moments ago, the topic of today's conversation is on PNH, and then as you mentioned just moments ago in your introduction, you said that your journey with PNH really started with a diagnosis of aplastic anemia.

We'll hear from Michael, who has lived with PNH for nearly two decades and has helped build one of the largest patient communities with people living with the disease.

And we'll hear from Lee Clark from the Aplastic Anemia and MDS International Foundation.

Before Michael became someone others turned to for support, he was searching for answers himself.

I had my first symptoms in summer of 2006.

And that's exactly the kind of work being done by people like Lee.

My name is Lee,

and I am the Senior Director of Patient Programs with the Aplastic Anemia and MDS International Foundation.

We're a nonprofit organization, and we were actually founded in 1983.

It's an autoimmune disorder that's affecting my body.

It's called aplastic anemia.

That's been the diagnosis.

It was given to me in mid-August.

Never forget.

9-11, 2001, 25 years ago.

Anyway, I was told to report to the hospital in the morning on the 11th, um, so they could start my, you know, admission into the hospital on my, uh, treatment for this aplastic anemia.

Wife and I, uh, wife drove me to Oakland and we, uh, Proceeded to a beautiful hospital.

Memorial services will be held on Thursday, October 1st at 5 p.m. at Gay and Chia Funeral and Cremation Service, with visitation from 3 to 5 p.m. that day.

In Lua Flowers, memorial donations can be made to Aplastic Anemia and MDS International Foundation.

Mark loved a story in connection with an old friend.

For a complete obituary to share a thought, memory, or condolence, please visit the funeral home website at gayandchia.com. Mary M. Hanlon, 101, of Cedar Rapids, passed away on Friday, September 11th.