4 posts tagged “America”

Taking action for lupus awareness in May

Posted May 16th, 2014 by


If you think you look good in purple, you’re in luck – today is Put on Purple Day, sponsored by the Lupus Foundation of America. As part of the greater Lupus Awareness (Action!) Month in May, today is your chance to make lupus visible and learn about the effects of this chronic inflammatory condition.

Lupus is classified as an immunological disorder by the National Institute of Health, which means that it can affect anything from your joints, skin and kidneys to your heart, lungs and brain.1 Systemic lupus erythematosus is the most common type of lupus, but there are a few other kinds that are much more rare. The cause of lupus is unknown, and anyone can be diagnosed, although it mostly affects women. Some common symptoms of lupus include:

  • Pain or swelling in joints and muscle pain
  • Fever with no known cause
  • Red rashes, most often on the face
  • Chest pain when taking a deep breath
  • Hair loss
  • Pale or purple fingers or toes
  • Sensitivity to the sun
  • Swelling in legs or around eyes
  • Mouth ulcers
  • Swollen glands

Since these symptoms are frequently caused by many other health conditions, you can see why getting diagnosed with lupus can be a difficult process. Many people who are living with lupus don’t even know it yet! 2 3

To help raise awareness for lupus, snap a photo of yourself in purple and submit it to the Lupus Foundation’s Tumblr page. And if you’d like some more ideas for awareness in May, visit the official Lupus Awareness Month page for info on donations, toolkits, quick facts and more.

The PatientsLikeMe team all decked out for Put on Purple Day!

The PatientsLikeMe lupus community is growing, so if you’ve been diagnosed, reach out to the more than 4,000 members who know all about living with the condition. They’re donating health data on treatments and symptoms, and don’t hesitate to ask a question in the forum, either – the community is always up for sharing what they know.

 Share this post on twitter and help spread the word for Lupus Awareness Month.


1 http://www.niams.nih.gov/Health_Info/Lupus/lupus_ff.asp

2 http://www.niams.nih.gov/Health_Info/Lupus/lupus_ff.asp

3 https://www.womenshealth.gov/publications/our-publications/fact-sheet/lupus.html


Let’s talk about Huntington’s Disease

Posted May 6th, 2014 by

May is packed with mental health awareness, and we’re continuing to recognize neurological conditions through Huntington’s Disease (HD) Awareness Month. HD is a mental health condition that affects brain cells (neurons) and causes them to degenerate over time.

According to the National Institute of Health (NIH), HD can only be passed down from parent to child through a genetic mutation. If a child has a parent with the HD gene, he or she has a 50% chance of inheriting it – and all people who have the gene will eventually develop HD.1 The Huntington’s Disease Society of America (HDSA) states that about 1 in 10,000 Americans are affected by HD, and symptoms typically begin between the ages of 30 and 50.1 2

There is no current cure for HD, but some treatments help to limit certain symptoms like involuntary muscle movement. If you’re looking to learn more about HD or get involved during HD Awareness Month, the Huntington’s Disease Society of America (HDSA) has a great advocacy video up on YouTube (check it out below), and the organization is always looking for e-advocates to join their “Let’s Talk about HD” campaign. And you can always find support and info from others that have walked a mile in your shoes in the HD community on PatientsLikeMe.

 Share this post on twitter and help spread the word for Huntington’s Disease Awareness Month.


1 http://www.hdsa.org/about/our-mission/what-is-hd.html

2 http://www.ninds.nih.gov/disorders/huntington/huntington.htm