@AaronBlocker_ profile picture
Aaron Blocker @AaronBlocker_

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

Joined August 2011
  • Tweets 12,446
  • Following 888
  • Followers 3,250
696 Photos and videos
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Aaron Blocker@AaronBlocker_
14 Nov 2024
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!
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Here in Washington DC attending the NORD Breakthrough Summit. Excited to hear from the FDA/NIH and other patients this week. #NORDSummit2024 #raredisease
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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
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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 jnj.com/media-center/press-r…

TREMFYA® (guselkumab) receives U.S. FDA approval for adults with moderately to severely active...

The first and only dual-acting interleukin-23 inhibitor approved in active ulcerative colitis, TREMFYA® showed highly statistically significant rates of endoscopic remission at one year in the...

jnj.com
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How’s everyone doing? Not on here much these days.
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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.
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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
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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
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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.
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Aaron Blocker retweeted
Dr. Glaucomflecken
@DGlaucomflecken
2 Aug 2024
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.
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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….
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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.
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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..
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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 😂
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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
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Today we say goodbye to my Meme, my adoptive mom/grandma.
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On June 4th my adoptive mom / Grandma passed away. She was battling liver disease. She adopted my sisters and I when we needed her most. She was one of the best humans I know. I’m glad her suffering is over but my heart is broken. I will miss her for the rest of my life.
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Anyone have IBD and have/had cancer that could talk to this person? They have thyroid cancer and severe crohns with an ostomy. #IBD #Crohns #Cancer
Crohn's and Colitis Young Adults Network@CCYANetwork
8 Jun 2024
Replying to @bottomlineibd @nataliesparacio @IldikoMe @DCharabaty @connecttocure @mustbthemusic @propelacure
@AaronBlocker_ @awanderingkelly @Jonathansegal85
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Really incredible paper and a nice breakdown of their work by @Dr_James_Lee in this thread. Exciting times in the world of IBD. #IBD
James Lee@Dr_James_Lee
7 Jun 2024
There's been amazing coverage of our new paper @Nature nature.com/articles/s41586-0… but I wanted to put together a walk-through (and make this accessible as possible). It's a bit long so get a cup of tea! The full version is open access so pls do have a read if you are interested...
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