A few Quick Facts:
- Lupus is an autoimmune disease.
- Lupus can damage any organ in the body.
- Lupus can cause life-threatening consequences.
- Ninety percent of the people who devPostselop lupus are females.
- It can take several years to get properly diagnosed
- There are 11 diagnostic criteria for Systemic Lupus
- Not all people with Lupus have the Butterfly Rash but it is fairly common in Lupus patients
- Positive Lab Results are not required for a diagnosis of Lupus (I did not have positive SLE antibodies at the time of my diagnosis but I have Lupus)
- Lupus is not contagious
How can you help?
Visit Lupus Foundation of America for a few ideas on how you can help raise awareness, volunteer, find clinical trials and other ideas to help those suffering from Lupus.
Don’t forget Put on Purple Day is coming up on May 16th! Wear Purple to show raise awareness and support for those affected by Lupus! If you decide to participate I would love to see pictures of everyone participating! On the 16th I will post a picture of myself in my Purple Shirt, If you would like please comment on that post with links to your pictures.
Over the weekend you may have seen me post this image already. I wanted to take a moment and expand upon this a little. There are many resources for help and support out there for People who have Lupus and their Families.
This Flier points out a few quick excellent ones. Definitely check the Lupus Foundation of America’s website and find your local chapter, they can link you to local specialists, support groups and other resources in your area. They also offer free educational material and services as well as a lot of information to read about Lupus. You can also call the 1-800 number and talk to a health educator if you have specific questions you can not find answers to.
You will notice Listed is a link for Clinical Trials, through clinical trials and research we get find better treatments and eventually a cure to Lupus. Without volunteers and participants this Research isn’t possible. If you are interested in helping find better treatments and paving the way to a cure please see how you can help today!
Other resources for help that were not mentioned in on this flier are your doctors, especially your Primary Care Physician and your Rheumatologist, they probably know you better than any of your doctors, and they will also be great resources for things like counselors and ideas on physical activities that might fit within your physical abilities. Your Rheumatologist may also know of other Clinical Trials in your area that may not be listed with the LFA. Also the larger hospital in your area may be a good resource for information, support groups, and finding educational information about Lupus.
There are also a ton of online support groups, When I was first diagnosed with Antiphospholipid Syndrome back in November, one of the first things I did was search Facebook for support groups, I was surprised at the amount of groups there were. I joined several of them. Some are better than others. I’ve left a few of them, and have learned which ones are most beneficial. Once it became apparent I was also looking at a diagnosis of Lupus I began joining Lupus support groups on Facebook as well. Fair warning there are A LOT of them. A few tips on Support groups on Facebook, some are open which means everyone on your friends list can see what you post. Some are closed which means they cannot. Some are private which means you will have to be invited to the group. Also pay attention to the rules and regulations. Some are stricter than others.
As you can see there are a lot of resources available. I encourage you to take advantage of the ones you think would be beneficial to you and your family!
Here are a few resources for you and your family members if you are living with Lupus: