Resources for People with Lupus & Their Families- Expanded

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!

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6 thoughts on “Resources for People with Lupus & Their Families- Expanded

    1. I have found some great online support groups on facebook! Some are specific to Lupus and Antiphospholipid Syndrome, a few are for Chronic Pain Sufferers, Chronic Illnesses, or Autoimmune Conditions (non specific). It has done wonders to find others going through similar things that I can connect with and talk to things about. In person I have found that my Local Lupus Foundation Chapter has two support groups that meet in my city once a month and I will attend at least once of these groups soon. Their next meetings are this week and next week so I may try to make it to one of them.

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      1. That is great. I will look into it. Now I only have to get over my other obstacle–being completely exhausted whenever I schedule something 😉 Thanks!!

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