Aaron Blocker

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Aaron Blocker

Rare disease and IBD advocate since 2010, raising awareness, sharing resources, and empowering patients.

Living with Crohn’s and Hypophosphatasia, I work to educate, advocate, and support those navigating chronic illness.

07/09/2025

My First TREMFYA Injection:

Last night I did my first injection of TREMFYA. Now that I have completed my loading dose infusions, I move to the maintenance phase which is one injection a month.

Overall it was a really easy injection. The injector is a “push touch” pen where there is no button, you just press it down into your skin and it starts to inject.

Had some minor injection pain but was not bad.

I will post a video of the injection experience and show off the pen but very pleased with how easy it was.

06/08/2025

My Last TREMFYA loading dose! Here’s how I’m feeling.

Today I received my final TREMFYA loading dose infusion to treat the Crohn’s disease.

Before TREMFYA my clinical remission was gone, I had some bleeding and just didn’t feel great.

Now after 3 infusions I’m feeling a lot better. My symptoms are better, the bleeding has stopped and I can just tell my Crohn’s is doing better.

I’m excited that it seems to be working and to move into the maintenance schedule of one injection a month.

If you have questions about TREMFYA let me know!

15/07/2025

Happy 10th Birthday to my Link!

My cat is 10 years old today. Everyone tell him Happy Birthday and I’ll relay the message.

11/07/2025

TREMFYA infusion #2

I had my second infusion this week. Here’s what I’ve noticed post infusion and what has changed after the first one. ⬇️

Since my first infusion my symptoms are better.

I had a fissure and some blood loss, that has healed up and my labs look better.

After my first infusion I was very fatigued. I’m much less fatigued this time.

Overall things are trending in the right direction. I’m feeling much better.

Still having some minor symptoms but hoping now that I’ve had my second loading dose I’ll get even more improvement.

10/07/2025

This week I had my yearly Rare Disease Appointments in Nashville.

I got some good news at this one!

Once a year I get a kidney ultrasound to check if there’s any damage to my kidneys from Hypophosphatasia and I also get a bone scan every other year to see how my bones are doing.

Thankfully my kidney ultrasound was normal and my bone scan actually showed a 10% INCREASE in bone strength in my arm!

This is a significant increase since my last bone scan. Meaning Strensiq ( my enzyme replacement therapy is working)

Overall it was a good appointment and things remain stable.

30/06/2025

One thing about chronic illness I don’t think people understand.

It’s legit like having a second full time job and I don’t think people without chronic illness understands.

We have to manage all the doctors appointments, calls to/from the doctor, dealing with the pharmacy and insurance companies, prior authorizations… the list goes on.

I spent 4 hours on the phone a couple of weeks ago with the insurance and doctor’s office about a procedure. In one day, 4 hours.

There’s no great system in place to help either because if we don’t get involved in certain things then unfortunately they won’t get done.

What about you? Do you feel like it’s like having another full time job? How do you manage?

27/06/2025

Injection Realness.

This is one of 3 doses of my rare disease medicine I do each week.

And it gets really hard sometimes to continue to do them when they’re so painful.

Don’t get me wrong I’m grateful for this drug. But doing 6 injections a week for the last almost 8 years that are painful and I have scar tissue to breakthrough gets challenging.

It makes it hard to stay on track sometimes as well. It just gets mentally and physically draining to have to do so many of these painful injections.

The alternative is much worse I know that but I think it’s fair and valid to acknowledge how hard this is.

20/06/2025

I’ve always stood up for science and the harms of pseudoscience.

Right now we are seeing pseudoscience being pushed at high levels. We are seeing anti-vaccine advocates who question some of the best science we have being put on prominent vaccine advisory committees.

Science is under attack in a way I don’t think we’ve ever seen and the impact will last for decades.

People will be harmed even if you don’t think so, they will. Misinformation kills.

Staying silent isn’t an option anymore if we want to continue to find treatments for diseases. Keep preventing the preventable diseases and finding cures.

This shouldn’t be political. We should all want this. We should all want to support the science that saves lives and truly keeps us healthy.

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http://www.aaronblocker.com/

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