#aosd

[hoezhere]

feeling more human and hooked on her flesh i lay my heart down with the rest at her feet.

hoz just gave us a lesson in female gaze didn't he.

[spoonie-living]

Macrophage Activation Syndrome Session

MAS is one of the leading causes of death for people with Systemic Juvenile Idiopathic Arthritis (SJIA) or Adult Onset Still’s Disease (AOSD). This can also be a worry for people with SLE lupus or Kawasaki Disease.

MAS is some scary business, but it’s a possibility you’ve gotta stay on top of. If you’re at risk, be sure to read this writeup to get the most up-to-date research and info on causes, diagnosis, monitoring, and treatment. As always, Kirstie is thorough and doesn’t hold back on the scaries.

All this is from the 2017 American College of Rheumatology Meeting---nice and fresh!

[graysongoal]

Emapalumab Induces Remission of MAS - Not Standing Stills Disease

According to a new journal article, emapalumab can bring on remission of Macrophage Activation Syndrome (MAS).

This is amazing news. MAS is a terrifying secondary condition. It is most common in SJIA and AOSD, but can pop up in lupus and other conditions. If you want to learn more about MAS itself, I covered a session on the condition at the 2017 ACR annual meeting. You can learn more about the immunology on Frontiers.

[hello-i-am-eric]

My name is Eric. In 2012 I was diagnosed with two rare diseases that changed my life. My body experienced extreme inflammation and pain as my immune system reacted poorly. As my lungs were failing and my doctors out of options my wife was told they were just going to keep me comfortable. She managed to get me transferred to a hospital with ECMO due to my lung failure. It was two weeks after being placed on ECMO I was diagnosed with HLH. The treatment changed from antibiotics to chemotherapy and steroids. I was able to be taken off ECMO after 34 days and remained on ventilator support. I spent a total of 99 days inpatient. I made a partial recovery and remain on maintenance medications. I hope to help support and inspire others like me.

[chronicallypos-blog]

#Repost @starrynita with @repostapp ・・・ Thanks to @invisibleillnessawareness for the pictures to use for a collage. this is me. This is why I wear a surgical mask in public often times. This is real, my life and I am living as well as I can. #aosd #chronicillness #chronicpain #surgicalmask #spoonie #awareness #invisibleillnessawareness #asthma #autoimmunedisease #undiagnosed #raredisease #spoonielife #butyoudontlooksick

[raseforcrps]

KNOWvember: Little is known about the pathology of the condition of Adult Onset Still's Disease. If the condition becomes chronic, treatment may be limited to modalities including anti-inflammatory options and corticosteroids. Most complications from adult Still's disease arise from chronic inflammation of organs and joints. No single test identifies adult Still's disease. Imaging tests can reveal damage caused by the disease, while blood tests can help rule out other conditions that have similar symptoms. To learn more information surrounding this condition and to seek helpful resources, visit: http://www.arthritis.org/about-arthritis/types/adult-onset-stills-disease/ #KNOWvember #AdultOnsetStillsDisease #AOSD Arthritis Foundation

[raseforcrps]

KNOWvember: Little is known about the pathology of the condition of Adult Onset Still's Disease. If the condition becomes chronic, treatment may be limited to modalities including anti-inflammatory options and corticosteroids. Most complications from adult Still's disease arise from chronic inflammation of organs and joints. No single test identifies adult Still's disease. Imaging tests can reveal damage caused by the disease, while blood tests can help rule out other conditions that have similar symptoms. To learn more information surrounding this condition and to seek helpful resources, visit: http://www.arthritis.org/about-arthritis/types/adult-onset-stills-disease/ #KNOWvember #AdultOnsetStillsDisease #AOSD Arthritis Foundation

[loveweddingsng]

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Congrats @ayokunu_ and @susandeborahs 🎥: @xwmedia 💍: @verawanggang #LoveweddingsNG #AOSD #verawanglove #Proposal #engaged #love #happy (at Four Seasons Hotel London at Park Lane)