6 posts tagged “stiffness”

Spreading the word for arthritis

Posted May 23rd, 2014 by

Lupus? Check. Fibromyalgia and ME/CFS? Check. ALS, cystic fibrosis, Huntington’s disease, mental health, schizophrenia, anxiety and depression? Check!

There’s been a ton of awareness going on in May, but there’s still one more theme to go – National Arthritis Awareness Month. This month, the Arthritis Foundation (AF) is encouraging us all to spread the word to everyone we know.

According to the American College of Rheumatology (ACR), arthritis is an umbrella term used to describe over 100 medical conditions and diseases, known as rheumatic diseases.1 The CDC estimates that 52.5 million adults in the United States have been diagnosed with some form of arthritis (including rheumatoid arthritis, gout, lupus, or fibromyalgia).2 Common symptoms generally include, but are not limited to:

  • Joint pain
  • Stiffness
  • Inflammation or swelling (most frequently in the hips, knees, hands and wrists)

If you’d like to learn more, the ACR has gathered a wealth of information on all the different kinds of arthritis. And if you’re not sure how to participate in Arthritis Awareness Month, here are a few places to start:

Finally, with over 6,000 members, the rheumatoid arthritis community is the largest group of arthritis members on PatientsLikeMe, but many more are living with osteoarthritis (3,994) psoriatic arthritis (1,278) and other forms of the inflammatory condition. They’re donating their personal health data to help others learn about life with arthritis, and they’re always sharing in the forum about symptoms, treatments, advice and more.


1 https://www.rheumatology.org/about/arthritismonth.asp

2 http://www.cdc.gov/arthritis/data_statistics/arthritis_related_stats.htm


Recognizing Multiple System Atrophy (MSA Parkinson)

Posted March 20th, 2012 by

In observing Rare Disease Day at the end of February, we talked how there are 7,000+ conditions that are categorized as rare diseases due to their lower prevalence (less than 200,000 people in the US).  Today we’d like to spotlight one of these lesser-known conditions:  multiple system atrophy (MSA), which affects 536 PatientsLikeMe members and approximately 50,000 Americans.

A Snapshot of the MSA Parkinson Community at PatientsLikeMe

There are no celebrities with MSA, nor is there a high-profile nonprofit organization driving awareness of the disease.  Instead, MSA patients have organized themselves through a “Miracles for MSA” Facebook page and determined grassroots efforts.  They’ve also designated March as Multiple System Atrophy Awareness Month.  Their goal?  “We want to reach everyone affected by MSA and have them join us here to make our voices even louder next year.  Together, we can make miracles happen for MSA.”

What can you do to help?  Learn about MSA and help spread the word.  Previously known as Shy-Drager Syndrome, MSA affects middle-aged men and women and advances rapidly with a progressive loss of motor skills.  It is very rare for someone to live 15 years with MSA.  One of the common symptoms is stiffness, similar to what’s seen in Parkinson’s disease.  As a result, MSA is considered a “Parkinson’s plus syndrome,” but it does not typically respond to Parkinson’s treatments.

See MSA’s devastating symptoms firsthand – including losing the ability to speak and swallow solid foods – in this moving YouTube video made by the daughter of a MSA patient.  It’s been entered in the 2012 Neuro Film Festival from the American Academy of Neurology, with winners to be announced April 22, 2012.