Use Your Patient Power to Improve Lupus Diagnostics!

Lupus is a chronic inflammatory autoimmune disease with a wide range of clinical presentations resulting from its effect on multiple organ systems. Due to its complexity, diagnosis can often be an arduous process. 

Lupus is particularly difficult due to the heterogeneity of the disease, in that every person with lupus is unique and no two patients’ symptoms or outcomes are the same.  This can often lead to incorrect and delayed diagnoses. Frequently patients are diagnosed with other lupus overlap diseases like rheumatoid arthritis, fibromyalgia, Raynaud’s Disease, or Sjögren’s Syndrome before a lupus diagnosis is made.  This can be frustrating to doctors and quite frankly, dangerous for patients. 

On average, it takes nearly six years for people with lupus to be diagnosed. In a recent study, a majority (63%) of people with lupus surveyed report being incorrectly diagnosed - LFA

Though heterogeneity makes it challenging, I would venture to say that it is not the biggest stumbling block for a diagnosis.  One of THE biggest stumbling blocks is that most laboratory tests currently used for testing and diagnosing lupus are extremely antiquated.  

In a recent webinar with Lupus LA, our go-to advisor on all things rheumatology, Dr. Don Thomas (www.lupusencyclopedia.com) went on to state that even despite advancements in medications, the lab tests used to diagnose and monitor lupus have not seen a significant update in over 50 years. 

 “Lupus tests are stuck in the 1960s!” - Dr. Don Thomas, The Lupus Encyclopedia

As already stated, outdated tests contribute to delayed and often incorrect diagnoses, and they fail to accurately monitor disease activity, which is essential for effective treatment.

I know I speak for not only myself but the majority of lupus patients by saying it is time to step out of the old ways of the past and look towards improving diagnostics for current lupus patients and future generations to come.  

You might feel powerless in helping to make change in the trajectory of diagnostics and improved lupus therapies, but, what if I told you, that YOU hold a significant amount of power? 

Lupus patients have a hidden superpower that not many people talk about.  A power that you don’t even see, but one that holds the key to unlocking better research, better diagnostics, and better treatments for future generations to come. 

It is your blood.  Your super antibody-rich blood, to be exact, that when studied, could change so much.  

What is Plasma?

Plasma is the liquid portion of blood and is made up of various blood proteins, including antibodies.  Antibodies are a part of the immune system that helps identify and defend against foreign substances such as viruses and bacteria.  The body creates antibodies to fight off “outside” invaders like infectious diseases. However, sometimes a person’s immune system may produce what is known as an autoimmune response. When this happens, antibodies target a person’s own body and can cause an autoimmune disorder, like lupus.  

With lupus, the blood can produce about 200 different antibodies that attack healthy tissue by mistake, causing inflammation, tissue damage, and organ failure (if left untreated). 

Why Does This Matter?

This leads back to you.  The medical diagnostic industry relies on antibody-rich plasma donations from people like you to make test kits and aid in the research and development of new and better test kits.

Essentially, through a simple blood sample or plasma donation, you can use your superpower for good.  You can become a change-maker in your own right.

Becoming A Donor:

As a donor, your blood sample or plasma donation could help the diagnostic process for others who may have the same condition.  

Plasma Services Group (PSG) is an FDA-registered facility that specializes in recruiting patients diagnosed with autoimmune or infectious diseases. Their mission is to improve the medical diagnostic industry and advance scientific research. 

They understand the challenges people face with lupus and they appreciate the invaluable contribution your plasma donation is to the medical research community.

Our goal is to provide an outlet to those who want to participate in a cause that is near and dear to their heart. Your diagnosis is our focus. - Plasma Services Group

By becoming a plasma donor with PSG, you are directly helping the autoimmune and/or infectious disease communities. You can make a contribution to the medical research community that will matter.  Take a moment to watch the introduction video below!

Not only are you making a difference, but qualified donors are compensated for their time and efforts. To find out more, please click the link below or give them a call at 215-355-1288 x6. Make sure to tell them "More Than Lupus" shared this opportunity with you.

Lupus can make you feel powerless. But through becoming involved in the research process you can take back your power.

YOU have the power to improve lupus diagnostics. Don't miss this opportunity to help!

* You must be at least 18 years of age, possess a valid ID, and weigh at least 110 lbs.

Click here: Donor Form - PSG Donors

Written By:

Kelli Roseta 

**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness.   All intellectual property and content on this site and in this blog is owned by morethanlupus.com.  This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2024.

Sources:

Delayed diagnosis adversely affects outcome in systemic lupus erythematosus: Cross-sectional analysis of the LuLa cohort - PMC (nih.gov)

Diagnosing lupus | Lupus Foundation of America

The Lupus Encyclopedia, By Dr. Don Thomas, Jr. Johns Hopkins Press, p. 389, 23

PSG Donors | Moorestown, NJ & Philadelphia, PA | Plasma Donations, Lyme Disease Research