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in Health &middot August 19, 2015

Resources for People with Arthritis

Whether you were diagnosed last week or last decade, you might be looking for resources on living with arthritis. Since I am fairly involved with the community – I’m a Cure Arthritis Ambassador for the Arthritis National Research Foundation – I thought I would put together a list of resources. They are organized by type, such as organization, convention, social media, etc. Please feel free to comment with any that I may have missed. The point of this is to help other people, and I hope that it helps you, too.

Arthritis Resources

Organizations

These are some of the organizations out there. Some are for research, some are for awareness, some are for all. I have included in brackets the country that they are based just in case you want to know.

Arthritis Foundation – [US] This is the most well-known foundation in the US for those of us with arthritis and probably the largest one. As they say, “The Arthritis Foundation is the Champion of Yes. We lead the fight for the arthritis community through life-changing information and resources, access to optimal care, advancements in science and community connections. Our goal is to chart a winning course and make each day another stride towards a cure.”

Kids Get Arthritis Too – [US] This is a subset of the Arthritis Foundation and is about, well, kids. Specifically, “The Arthritis Foundation’s online home for the 300,000 families living with juvenile arthritis” (from their website)

Arthritis National Research Foundation – [US] “The Arthritis National Research Foundation’s mission is to provide initial research funding to brilliant, investigative scientists with new ideas to cure arthritis and related autoimmune diseases.” (their website)

JGCAF – [US] Jeffrey Gottfurcht Children’s Arthritis Foundation “The Foundation is a wish-granting organization whose mission is to make dreams and wishes a reality for children living with Juvenile Arthritis.” (their website)

Arthritis Care – [UK] My understanding is that they are the UK equivalent of the Arthritis Foundation. “Arthritis Care exists to support people with arthritis. We are the UK’s largest charity working with and for all people who have arthritis.”

NRAS – [UK] The National Rheumatoid Arthritis Society says, “We aim to provide information and support for people with rheumatoid arthritis (RA) and juvenile idiopathic arthritis (JIA), their families, friends and carers, as well as health professionals with an interest in RA”

Arthritis Research UK – [UK] Their website says, “Everything we do is driven by knowledge to positively impact on what matters to people with arthritis. Our long term commitment is to: prevent the onset of arthritis[,] develop a cure for arthritis[,] transform the lives of those with arthritis.”

Conventions

MedX – [US] “This two-day educational event will focus on the future of medical education in the new Millennium, the role technology and networked intelligence might play in driving educational innovation, the new challenges facing health care education in the new Millennium, as well as the need to change the culture of medical education to be more patient-centered, participatory and patient-safety-focused.”

Advocacy Summit – [US] “The Advocacy Summit is an annual event when people living with and affected by arthritis come from every corner of the United States to convene in Washington, DC.. There they learn how to advocate and build a continuing relationship with their Members of Congress and their staff. Children are welcome to attend the Kids’ Summit where they learn to advocate for themselves and meet other children living with and affected by arthritis.”

JA Conference – [US] This is “The Arthritis Foundation’s nationwide event that has brought together and educated kids and families since 1984.”

Arthritis Research UK Centre for Sport, Exercise and Osteoarthritis Conference: Physical Activity and Osteoarthritis – [UK] “The conference aims to raise awareness of Musculoskeletal health as a lever for individual and population health and wellness.”

BSR Rheumatology – [UK] “Rheumatology 2015 will be a world-class conference held at Manchester Central and run by the British Society for Rheumatology (which incorporates the British Health Professionals in Rheumatology) for all health professionals in the field of Rheumatology. Be a part of the UK’s biggest Rheumatology conference.’

Communities

If you have arthritis or another chronic pain condition but don’t know anyone else who does, it can feel very isolating. Here are resources for finding other people like you and feeling less alone.

Creaky Joints – From their website: “Today, more than 75,000 people with all forms of arthritis and their families have been touched by CreakyJoints with meaningful support, updates and education, innovative advocacy and global research projects. And CreakyJoints continues to grow with new members signing up every day.”

The Pillow Fighters –  From their website: “I’m building a supportive community (*cough*army*cough*) of positive, young people who just happen to have chronic illness. It’s so easy to just talk about the negatives in the chronic illness community, but I’m changing that.”

Arthur’s Place – As they say, they are “the first online magazine and social network specifically for young people with arthritis.”

On social media, use these hashtags (or similar ones) and find other people. There are a lot of us, especially on Twitter, and there are a lot of amazing people in our own little community right there! #arthritis #rheum #psa (psoriatic arthritis) #ja #jia #ra #ChronicLife #fibro etc.

There’s also a great infographic over at Superior Magnetics featuring everything you need to know about arthritis. If you’re looking for statistics, that’s a great place to start!

Has this helped you? Do you have anything else that I missed? 

Kate Mitchell

Kate Mitchell is a blogger, chronic illness patient, and advocate who helps people understand chronic illness and helps chronic illness patients live their best lives.

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  1. How The Internet Helps Spoonies says:
    September 23, 2015 at 8:00 am

    […] you could probably gather from my list of resources for arthritis patients and their families, there are a lot of things on the Internet that can help spoonies. But there are several ways that […]

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  2. Dear Selena Gomez says:
    October 28, 2015 at 8:01 am

    […] Please know, Selena, that there are a lot of people out there rooting for you. I’ve always been kind of neutral about you, but between the lupus reveal and your new album – it’s seriously amazing – I’m officially a fan. And the spoonie community is a very supportive one. Even if you aren’t able to actively participate, know that it is there and is full of people who support and care for each other. This applies to the rheum community, too. You can find us on Twitter and social media in general by using hashtags like #rheum (psst – I also wrote a whole post about resources for people with arthritis and other rheumatic diseases and condit…). […]

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  3. Kate the (Almost) Great | Boston Lifestyle Blog - Chronic Illness Bloggers To Follow - Kate the (Almost) Great | Boston Lifestyle Blog says:
    October 7, 2017 at 6:12 pm

    […] Accepting Your Body with Chronic Illness, How To Become an Advocate for Patients, Resources for People with Arthritis […]

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Dos and don'ts for when someone in your life is di Dos and don'ts for when someone in your life is diagnosed with autoimmune arthritis! What are some that you would add?⁣
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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.⁣
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ID: "So someone you know was diagnosed with Autoimmune Arthritis". Under the Do column (indicated with a green checkmark) is:⁣
"As how they feel about it⁣
Offer specific ways to help⁣
Treat them normally⁣
Ask follow-up questions⁣
Wear a mask around them when sick."⁣
Under the don't don't column (indicated with an x in a red circle) is:⁣
"Say “At least it’s not xyz!”⁣
Say that and not follow through⁣
Assume nothing about their lives has changed⁣
Conflate autoimmune arthritis with osteoarthritis⁣
Pass your cold to an immunosuppressed person".⁣
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#AutoimmuneDisease #RheumatoidArthritis #PsoriaticArthritis #AnkylosingSpondylitis #JuvenileArthritis
Weekj 26 of 2026 Weekly Scenes of a summer week Weekj 26 of 2026 Weekly 

Scenes of a summer week in Maine! So glad I work from home, which means I can work from my real home (Maine, if that wasn’t clear)

1️⃣ Lots of Harley time
2️⃣ Working from home means saving my PTO for fun things!
3️⃣ Lots of duck families (📸 my dad)
4️⃣ What a lot of my days look like - Harley and my current project (needlepoint). And, yes, I’m still in a cast.
5️⃣ Learned how to play Mahjong, which my parents love
6️⃣ Lake views on the 4th

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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.⁣⁣⁣⁣

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IDs:
1️⃣ Harley the golden retriever on a deck as seen through some plants
2️⃣ Kate takes a selfie
3️⃣ A duck with little ducklings following on a lake
4️⃣ Harley coming up to Kate. Her legs are out on an ottoman, 1 foot in a walking cast, and an in-progress needlepoint project
5️⃣ Looking down at a Mahjong table with the game set up
6️⃣ A kayak on the shore of a lake 

#MaineTheWay #MaineSummer #Needlepoint #MaineLife
Living with chronic pain is really hard. You’re wi Living with chronic pain is really hard. You’re winning every day you’re still here.⁣
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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.⁣
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ID: The background image is a lake at sunset. Text reads what's above the first square and also "katethealmostgreat".⁣
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I've been spending a fair amount of time at my foo I've been spending a fair amount of time at my foot surgeon's office this year, and boy has it been messing with my head. ⁣
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I spent a lot of time from 2001-2010 dealing with my left foot. Long story short, it took until this foot surgeon saw me in 2010 after fixing this foot for me to be diagnosed with rheumatoid arthritis. But I spent those 9 years going from doctor to doctor, having surgery after surgery, trying to figure out what was causing my pain and to fix it. ⁣
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Was it the tarsal coalition? Did I have another chronic health issue? Etc. ⁣
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I spent from age 10 to 19 unsure what exactly was wrong with me and in huge amounts of pain. We thought we figured it out, and then something else happened. ⁣
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We know exactly what is wrong with this foot this time around: in 2024, I got 3 stress fractures, and no one put me in a boot. They almost fully healed before breaking in 2025, and then the same thing happened in 2026. ⁣
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This is a different part of the foot than I used to deal with, but any problems with my feet and especially my left foot messes with me. While this doctor eventually fixed the problems and even got me diagnosed with RA, every time I go back to his office, I have to fight not to become 17 again. ⁣
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PTSD is a bitch.⁣
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(PS - if you want to know why I'm going back to this guy when it messes with me, it's because I don't trust anyone else to fix my foot.)⁣
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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.⁣
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ID: Kate takes a selfie in a doctor's office. ⁣
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#PTSDAwareness #ChronicallyIll #TarsalCoalition #RheumatoidArthritis #Osteoporosis
Week 25 of #2026Weekly Happy to be in Maine for Week 25 of #2026Weekly 

Happy to be in Maine for a few weeks! I didn’t get up to a lot, so another week of very few pictures

1️⃣ IVIG 
2️⃣ Lots of beautiful birds have been coming to my mom’s bird feeder!

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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.⁣⁣⁣⁣

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IDs: 
1️⃣ Looking at Kate’s lap. Tubes are coming out from under her shirt and there’s a Kindle
2️⃣ Birds arriving at a bird feeder as seen through a window

#ChronicallyIll #InvisibleIllness #ChronicPain #IVIG
What do you have to do every day for your chronic What do you have to do every day for your chronic illnesses? ⁣
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For context, I have rheumatoid arthritis, fibromyalgia, endometriosis, POTS, heart disease, osteoporosis, and more. ⁣
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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.⁣
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ID: ⁣
Things I Do Every Day for My Chronic Illnesses⁣
Take pills at least 4 times a day⁣
Don’t eat gluten, dairy, corn, soy, or eggs⁣
Sleep 7+ hours a night⁣
Consume 80-100 grams of protein, 120 mg of calcium, 5-10 grams of sodium⁣
Wear a mask whenever I leave the house⁣
Do pilates 4+ days a week⁣
Work from home⁣
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#ChronicallyIll #InvisibleIllness #RheumatoidArthritis #Fibromyalgia
Filmed this back in April (hence the sweater) but Filmed this back in April (hence the sweater) but it applies to whenever I have appointments! 

Video: Kate talks to the camera while holding a purse. She holds up individual items mentioned in the video before putting them in the bag. There are captions. 

#ChronicallyIll #RheumatoidArthritis #Osteoporosis #ChronicPain
There are a lot of medical advancements that I'm g There are a lot of medical advancements that I'm grateful for, but one of them is the ability to do IVIG at home. ⁣
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I'm on IVIG - or, in my case, subcutaneous immunoglobulin replacement therapy - because I have to kill the better part of my immune system. There are, in fact, some parts of my immune system that don't attack me, which is why we add them back in. This helps reduce my chance of serious infection and also made my rheumatologist feel comfortable enough to increase my Rituxan dose. ⁣
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This is a weekly treatment that I do, but it's so much better that I can do it at home than going into the hospital. It takes around 2.5 hours from taking my pre-meds to tossing my needles into a Sharps container. While it's another thing that I have to do, because I do it at home, I don't have to risk exposure to infections at the hospital or deal with Boston traffic, which would add another hour to the process. ⁣
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I can finish my treatment and then go about my day, which I'm very grateful for.⁣
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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.⁣
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ID: A Kindle on Kate's legs. There are tubes for an infusion coming out of her shirt.⁣
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#IVIG #ChronicallyIll #RheumatoidArthritis #Autoimmune #AutoimmuneDisease
Weeks 23 and 24 of 2026 Weekly! The last two wee Weeks 23 and 24 of 2026 Weekly! 

The last two weeks were prepping for my infusion, having/recovering from my infusion, and getting caught up after. This meant things were very busy but also I don’t have a lot to show for them. 

1️⃣ New glasses! I really like having multiple pairs so I can switch them as I want.
2️⃣ One of my current projects. I got this standing hoop for my birthday and I’m working on an alphabet (uppercase and lower, although I’m still working on the lower) with extra floss.
3️⃣ Infusion time! I got my higher dose so hopefully my symptoms improve a lot in the upcoming weeks🤞🏻

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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.⁣⁣

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IDs: 
1️⃣ Kate takes a selfie. Her new glasses are thin silver circles
2️⃣ An in-progress cross-stitched alphabet in a special hoop stand that Kate is sitting on.
3️⃣ Kate takes a selfie in an infusion chair.

#ChronicallyIll #RheumatoidArthritis #AutoimmuneDisease #CrossStitcher
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