Lady Gaga raising awareness about a painful, misunderstood illness

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When Lady Gaga took to Twitter to announce she has been living with debilitating pain, which has been diagnosed as fibromyalgia, people who also suffer from the illness sympathized. They responded with relief, happy that someone was finally talking about a terrible disease which has no cause and no cure.

More than six million Americans currently suffer from this devastating illness, which causes a long list of symptoms, including chronic pain and debilitating fatigue. Patients can also be afflicted by many other issues, including sleep disorders, intolerance to medicines, headaches and abdominal, bladder and bowel problems. Sufferers often report experiencing what’s known as “fibro fog,” which affects short-term memory and executive functioning.

Sharon Waldrop, vice president of the National Fibromyalgia and Chronic Pain Association, has herself been dealing with the long-term effects of fibromyalgia for more than 20 years. She wrote an op-ed in The Hill on Saturday, explaining the sad truth that this is a disease which is difficult to beat.

She wrote: “Current medication is largely ineffective. What’s more, treatments can be costly or even worsen symptoms. Many times, providers tell patients to ‘suck it up’ and learn to live with the pain due to outdated training.”

Helpless to do much for their patients, doctors don’t really deal with fibromyalgia patients, leaving them to “navigate the health-care system on their own,” says Waldrop, noting that some sufferers are “left unable to work or lead a full life due to the disorder destructive effects.”

Waldrop believes that raising awareness will lead to better treatments and, eventually, a cure.

Lady Gaga is attempting to shine a light on the disease. In a Twitter post from September 12, she wrote: “In our documentary the #chronicillness #chronicpain I deal w/ is #Fibromyalgia I wish to help raise awareness & connect people who have it.”

Gaga is referencing her Netflix documentary, “Gaga: Five Foot Two,” which addresses her experiences dealing with fibromyalgia, while recording her latest album. Intimate moments, as she’s coping with recurrent pain, are included.

Because of the condition’s invisibility and the public’s misunderstanding, many people are afraid to reveal their diagnosis and are suffering in silence.

Chronic pain diseases like fibromyalgia cost Americans more than $635 billion a year in combined lost productivity and healthcare costs, which is higher than the annual costs of heart disease, cancer and diabetes combined, Waldrop points out.

In her op-ed, she recalls how the U.S. Department of Health and Human Services (HHS) released the National Pain Strategy in March of 2016, which was created at the request of the Senate to address the burden of chronic pain in America.

“The strategy was devised by HHS’s Interagency Pain Research Coordinating Committee, which includes representatives from a wide range of federal government agencies, doctors, scientists, patient advocates and the public. The president of our organization, Jan Chambers, served on this committee,” Waldrop noted. She explained:

“The strategy makes recommendations for improving overall pain care in America in six key areas: population research, prevention and care, disparities, service delivery and payment, professional education and training and public education and communication.

It calls for major changes in research funding, developing better procedures and measuring tools to improve and monitor the prevention and management of pain, reducing the barriers to care that people who suffer from chronic pain often face and increasing public awareness and understanding of the diagnosis.

However, to date the strategy has not been funded or implemented, which leaves patients with hollow answers and no solution. We need Congress and the White House to make chronic pain a priority now by funding and implementing the plan.”

Waldrop finishes her piece by suggesting that readers realize just how close this illness hits home. Says Waldrop, “Those who suffer from fibromyalgia could be your friends, coworkers, neighbors and family members, who have been suffering in silence with this disorder for years. More answers are out there, but patients need lawmakers to direct more time, personnel and funding toward finding them.”

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