Aaron Blocker

Award Winning Patient Advocate | Rare & Autoimmune Diseases | Data & Analytics Consultant | Science | #IBD #Hypophosphatasia Views are my own

[Aaron Blocker @AaronBlocker_]

Hi Everyone.
I am going to be deactivating this account. I don’t use this platform much anymore and don’t plan on using it moving forward.

You can find me on other platforms as Instagram & TikTok @AaronBlocker_
Bluesky @AaronBlocker

It’s been real my friends!

[Aaron Blocker @AaronBlocker_]

Here in Washington DC attending the NORD Breakthrough Summit. Excited to hear from the FDA/NIH and other patients this week. #NORDSummit2024 #raredisease

[Aaron Blocker @AaronBlocker_]

@drclairetaylor I use one! For certain coffee I make like a pour over. I use it to make my sons hot chocolate since it’s easy to control the temp and then I don’t drink a lot of hot tea but when I do I also use my kettle. However in times past before a kettle I’d just heat the water on stove..

[Aaron Blocker @AaronBlocker_]

Yesterday I had my 27th surgery related to my rare genetic disease.

Been through this many times but it’s never any easier.

Surgery went well. My arm is very sore. #chronicillness #hypophosphatasia #raredisease

[Aaron Blocker @AaronBlocker_]

Last week the FDA approved Johnson & Johnson’s TREMFYA for Ulcerative Colitis! The first dual action IL 23 Inhibitor for UC!

The data looks really good and this is exciting for UC patients to have another great treatment option. #IBD #UC #Tremfya

https://t.co/t1Qryy3cXp

[Aaron Blocker @AaronBlocker_]

How’s everyone doing? Not on here much these days.

[Aaron Blocker @AaronBlocker_]

@DrunkAubie These refs are something else this game good lord

[Aaron Blocker @AaronBlocker_]

Dealing with a surgical site infection in the incision from my most recent surgery. This is the 3rd time I’ve had one of these. Hoping oral antibiotics clear it up so I don’t need anymore surgery or PICC line like the last two times.

[Aaron Blocker @AaronBlocker_]

Also, I hate the post-surgery stomach issues. All the meds, pain meds, stress from surgery really gets the Crohn’s pissed off. #IBD #Crohns #surgery

[Aaron Blocker @AaronBlocker_]

Day 5 post op. Pretty tough day. My leg looks brutal, and just a lot of pain. As to be expected at this point. Post-op appointment yesterday was good, had a skin hematoma that needed to be drained which sucked. I’ll be in an immobilizer brace another week, the 12-13 stitches on the back of my leg have to be in for 2 more weeks. #hypophosphatasia #raredisease #surgery

[Aaron Blocker @AaronBlocker_]

There’s a lot the chronic illness community can learn from @sunisalee_ and @Simone_Biles as deal with mental and physical health problems yet faced them head on to achieve some amazing things at this Olympics. It’s about getting back up and taking care of yourself first.

[Dr. Glaucomflecken @DGlaucomflecken]

Maybe it’s because of my cardiac arrest, but I don’t understand why patients get upset when I say their symptoms are due to aging. 95% of what I diagnose is because we get old. I always bring it up as delicately as possible, but like do you know how lucky you are? I see patients in their 80s and think, “man I hope I get there one day.” So many things in this world can kill you. You’ve beaten the odds. Honestly, congratulations, you’re old.

[Aaron Blocker @AaronBlocker_]

@aboutIBD Here you go! I get my story is widely available but this was just… different. I wasn’t contacted by anyone and they made up some conversations.

[Aaron Blocker @AaronBlocker_]

Always lovely when someone messages you asking if a podcast episode is about you and you have never heard of it and lo and behold the whole episode is about your medical story.. with some creative liberties taken and I’ve never been contacted by said podcast….

[Aaron Blocker @AaronBlocker_]

I was asking for a letter of medical necessity to get some reimbursement for stuff related to my disease and it needs to come from him but so far he’s refused to write the letter because he doesn’t think what I am going through is related to my disease..

[Aaron Blocker @AaronBlocker_]

Tough having a doctor treat symptoms of your rare disease but doesn’t know anything about the rare disease itself so doesn’t believe what he’s treating is related to the disease. So I sent him research papers about my disease and what is happening is related.

[Aaron Blocker @AaronBlocker_]

Watching the Olympic gymnastic trials and I’m always amazed at these athletes. What they do is genuinely insane. But also as someone with a bone disease it gives me anxiety seeing what they do and knowing I’d break every bone in my body if I even tried to do a front flip 😂

[Aaron Blocker @AaronBlocker_]

Someone recently asked me what diet I’m on because I’ve lost so much weight. I said it’s called “Crohn’s Disease” #IBD #CrohnsDisease

[Aaron Blocker @AaronBlocker_]

@casscondray Thank you. Was a tough day.

[Aaron Blocker @AaronBlocker_]

Today we say goodbye to my Meme, my adoptive mom/grandma.