Lupus is a mysterious, brutal disease. Here's how you can join the fight against it

CNN

World Lupus Day is an annual event that highlights the disease's complexity and offers ways to improve quality-of-life for those who suffer from it.

What is Lupus?

The autoimmune disease Lupus causes organ damage, pain, fever and other symptoms. According to the Lupus Foundation of America, more than 5,000,000 people suffer from this condition. It affects everyone differently and is difficult to diagnose.

Mary Crimmings said that the Lupus Foundation of America's interim CEO, Mary Crimmings stated, "Research shows it can take six years on average to diagnose lupus once someone begins experiencing symptoms."

Advertisement

These delays may have devastating effects on patients. Researchers, patients, and advocates are working together to improve healthcare and research for the lupus disease.

Research and treatment barriers

Once diagnosed, lupus can be treated. Treatment is still difficult. In the past seven decades, only three lupus-specific therapies have been approved by the US Food and Drug Administration.

Patients often take antimalarial and chemotherapy medications off-label in order to control their symptoms. This can have serious side effects.

Lupus drug research is behind other diseases primarily due to the uniqueness of the disease and its variations.

Hoang Nguyen Ph.D, from Lupus Research Alliance, said: 'There are problems in the design of clinical trials and outcome measures. The community recognizes that this is a challenge that no one group can resolve.' It requires all stakeholders, including FDA, to work together.

The FDA’s Center for Drug Evaluation and Research (CDER) has partnered up with the Lupus Research Alliance to launch the Lupus Breakthroughs Accelerating Consortium (Lupus ABC), a public-private partnership that aims to address difficulties in lupus trials and accelerate therapy development.

Lupus ABC is a collaboration between medical societies, academia, clinicians, FDA and, most importantly, people with lupus.

Nguyen said that the main goal of the consortium was to give voice to people who have lupus.

Kaamilah Gillyard, a patient who has taken part in four clinical studies and suffered from lupus, believes that the input of patients with lupus is vital.

Gilyard said: 'This is an important step in the correct direction and I hope that things will move more quickly.

Crimmings added, 'The greater the support for research into the disease, then the more effective treatments will be available.

What you can do to make a difference

CNN's Impact Your World compiled ways that you can support lupus-lupus sufferers and help combat this disease.

Learn to educate yourself

This statement is often meant as a complement, but can be extremely dismissive and insensitive to those who are dealing with this condition. .

Don't tell me that I look great, because my body feels like crap on the inside. Racquel Dozier is the founder of Lupus in Color and a lupus warrior. She said, "My body is destroying itself."

Crimmings explained that it can leave people feeling isolated and misunderstood. 'Sometimes people feel like they don't really believe they're ill.

The symptoms of lupus are often not visible. It's important to keep in mind that even if someone appears healthy on the surface, they could be suffering from chronic pain and life-threatening conditions.

It is best to educate yourself to prevent this crime. The National Resource Center on Lupus of the LFA has an abundance of educational material from doctors, scientists and health educators as well as people with lupus.

Raising awareness

Crimmings, a CNN contributor, said: 'The greater the awareness of the devastating effects of lupus the more funding will be available for lupus education, research and support programs.

You can help spread awareness of lupus and its effects by speaking out in person or on social media. LFA has launched a campaign to raise awareness about lupus. You can use their toolkit, as well as your social media accounts, to help spread the word.

Post a picture of you wearing purple with the hashtags #LupasAwarenessMonth or #WorldLupusDay, along with your support for this cause.

The Team Make Your LINK Virtual 6 challenge is also available. You can raise money and awareness by running, hiking, biking, paddling or swimming anywhere between June 23 and 28.

Advocate

Advocacy is done by advocates for people with lupus and their families as well as for the healthcare professionals who treat them. They work with government officials and business leaders to increase investment in lupus education, research and support services.

The majority of lupus advocacy focuses on securing federal funding for research, treatment and, eventually, a cure. Lupus ABC, a partnership between the LRA and FDA, was the result of the latest push.

Gilyard, a 17-year-old who was diagnosed as having lupus, is determined to make a difference in the lives of those living with this disease.

When I was first diagnosed, I didn't have a role model. I didn't know who to turn to, or where to go.

Gilyard's advocacy is centered on engaging her community in lupus-related research, overcoming the lack of diversity among trials and promoting equity in healthcare for populations of color.

Gilyard explained, 'I enjoy speaking to people and clearing the air. I also like to address issues from the grassroots perspective.

"I want to give people options, when I didn't feel like I had any."

You can also be an asset by using your voice. Tell your elected officials about important policy issues relating to lupus by meeting, emailing, or tweeting them. Share your story if you or someone close to you has lupus. It could save lives.

Volunteer

Racquel Dozier understands the power of volunteerism. She fell into a downward spiral after being disabled permanently by lupus at the age of 30.

It had to be an inside job in order to change my feelings of guilt, sadness, and pain because I was forced to stop working.

The Henrico County resident in Virginia searched for a group of patients with similar looks, but was unable to locate one.

Dozier said, "I started Lupus in Color because I wanted to ensure that Black women are represented. And we can all help each other."

Former social worker and teacher, she now uses many of her skills.

Dozier stated, "I used all the skills that I gained through my college education and professional experience to create Lupus in Color."

'I am still working, but I don't get the money.'

The Crimmings team suggests that those who are interested in volunteering should contact a local charity for lupus and discuss their skill set to find out how they can help. Opportunities range from clerical support to organizing events to assisting with support groups.

Donate

The financial burden of patients is often overlooked when discussing funding for research.

Crimmings shared that 'Lupus has a significant impact on the economy'.

Crimmings stated that many people do not realize that people who have lupus may need dialysis or be receiving infusions for kidney disease. Sometimes, people are even unable to go to work. Recent research published in the Journal of Rheumatology showed that severe lupus costs $52,951 per year on average, compared to moderate disease ($28.936) or mild disease ($21.052). This can be a significant financial burden for those who are underinsured and may discourage them from seeking treatment.

Patient advocacy groups and Healthwell Foundation help patients with the cost. Healthwell's fund for Systemic Lupus Erythematosus was forced to close its doors to new applicants due to insufficient funding.

Nick Cannon, a Lupus warrior, attends the Walk to End Lupus Now at Exposition Park in Los Angeles on September 20, 2014.

It's fun to walk with a group or alone. LFA and LRA both sponsor walks all year.

Crimmings said that 'Lupus affects people in a way the public doesn't realize.

Donate to the above organizations and other groups that support patients with lupus by clicking the button below.