Lynn Matalana has skilled persistent ache for nearly her complete life and underwent surgical procedure in her 30s for fertility points. Instantly after the surgical procedure, she started experiencing a trove of unusual signs that by no means went away. A number of years later, after seeing 37 docs, I lastly heard the phrases “fibromyalgia.”
“On the time, I used to be operating a PR and promoting firm, and I assumed there was an actual want for consciousness about this situation. There have been most likely plenty of different individuals like me,” Matalana says.
However this was 1997, and the web was nonetheless fairly restricted. Social media did not exist. “You may submit data and write letters to individuals, but it surely was very primitive,” Matarana says. “I related with different girls who had fibromyalgia and began speaking to them.”
One of many girls was Karen Lee Richards, who went by an identical drawn-out journey of seeing a number of docs earlier than lastly getting a prognosis. For each girls, it turned clear that many individuals with fibromyalgia are ignored by the medical neighborhood and are usually not getting the care and help they want. They started sharing concepts about how they may assist individuals with fibromyalgia, and finally met at Matarana’s residence together with 5 different girls.
“We known as ourselves ‘pillow buddies’ as a result of we have been all leaning on pillows due to the ache,” Matalana stated.
Feeling a scarcity of dependable data, public consciousness, and restricted affected person help for individuals with fibromyalgia, Matalana and Richards co-founded what would develop into the Nationwide Fibromyalgia Affiliation (NFA). On the time of its founding, there have been solely seven members, but it surely was determined to carry a nationwide conference to boost consciousness. “I do not know why I assumed I may do that, however we invited 30 of the highest fibromyalgia and ache researchers from world wide and held it on the Common Studios resort in Los Angeles,” Matalana stated. “Finally, we had over 600 fibromyalgia sufferers and over 275 well being care suppliers. They labored with us on persevering with medical schooling, and we partnered with Cedars-Sinai Medical Heart.”
This was the primary time individuals had come collectively at this degree for fibromyalgia consciousness, and it put the Nationwide Fibromyalgia Affiliation on the map. “I believe the general public understands that I’m critical about spreading consciousness and constructing a corporation that helps individuals,” she says. “And now we simply celebrated our twenty eighth anniversary.”
