2 posts tagged “South”

Getting to know our Team of Advisors – Karla

Posted February 9th, 2015 by

This past Monday on the blog, Emile shared about her fibromyalgia and what being a part of the PatientsLikeMe Team of Advisors means to her, including how she hopes to help doctors understand that patients need to be treated as individuals, rather than just disease names. Today, we’re featuring Karla. She’s also a member of the Team of Advisors living with fibromyalgia as well. Read below to learn Karla’s views on patient-centeredness, open communication and healthcare in a rural community.

About Karla (aka kam-turtle)
Karla refers to herself as a Southern Gram, who tries not to let her fibromyalgia get in the way of having fun with her grandkids. Karla served as president of a community college prior to retiring from full-time employment in 2010. She has led volunteer boards and fundraising groups, worked in public relations and advertising, and actively worked in a variety of roles in her church. She continues to work part-time as a grant writer, researcher, and owner of a chicken farm where she has a rooster named Handsome. 🙂

After spending a long time finding treatments that worked for her, Karla is passionate about helping others shorten the time between diagnosis and condition management, and she would like there to be better understanding that fibromyalgia is not a ‘one-size-fits-all’ condition.

Karla’s view of patient-centeredness
She believes patient-centered healthcare involves open communication between healthcare providers and the patient: “it should be an active and ongoing process to evolve the patient’s care toward results to create a more productive and comfortable lifestyle. It is a two-way communication stream based on mutual respect.”

Karla on being part of the Team of Advisors
Being a part of the PatientsLikeMe Team of Advisors is very humbling but also refreshing to my soul. At times when my illness is at its worst, I have always hoped my affliction could at least somehow benefit someone else, somewhere, even in the future. That is actually happening with the opportunity to be on the Team of Advisors. Like me, each team member is willing to share freely and openly in hopes of making the future better for others. It is so humbling to represent patients from so many walks of life and bring hope for a brighter tomorrow. The work PatientsLikeMe and the advisors have been doing can truly change the way health care functions.

Karla’s experience seeking care for fibro in a rural community
A decade ago, fibromyalgia was a foreign term in my rural community, even to me. Doctors dismissed me as stressed, depressed and overweight. Employers openly joked that people with chronic fatigue syndrome, bipolar and other hidden illnesses were lazy. One doctor said I had a ‘bucket condition’ or unknown problem. After two hospital stays, XRAYS, MRIs, CAT scans and three or four doctors later, I confided in a nurse practitioner who knew me. She knew me before I had spiraled down into a life of pain and she knew I was not faking. She suggested a condition called fibromyalgia and advised seeing a rheumatologist in a regional area. There I received the diagnosis of fibromyalgia. I was devastated and utterly embarrassed. I didn’t want to suffer the ridicule from the uninformed public. When I was too sick to work, I would call in but if I had a doctor appointment, I would generally take vacation time so no one at work would know I was traveling to the rheumatologist.

I desperately wanted to learn about fibromyalgia to see if there was a cure or at least proven ways to manage the pain and fatigue. Eventually I had to give up my career and focus on my health. My family became educated about the condition and they understood my situation. So, then I began to own my situation and share my story. Amazingly, as word got out, many neighbors in my area contacted me to share similar frustrations. Healthcare in rural areas is in short supply, doctors are overloaded, hospitals are money-making machines and patients are deliberately kept uninformed. I firmly believe if not for the concern and care of one nurse practitioner who knew me personally, I might still be switching from prescription to prescription with no answers.

Unfortunately, ten years later, fibromyalgia is still very misunderstood. Based on my experience, I have learned to share about my fibromyalgia life, to advocate for hidden and chronic illness, to educate people about fibromyalgia and to encourage those on a personal journey to keep fibro from taking over their lives!

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PatientsLikeMe and USF Health collaborate to empower cancer patients

Posted December 4th, 2014 by

Partnership Marks the First Between the Patient Network and an Academic Health Center

CAMBRIDGE, Mass.—December 4, 2014—PatientsLikeMe and the USF Health Internal Medicine Department have partnered to improve health outcomes for multiple myeloma patients. People living with multiple myeloma and other cancers will be directed to PatientsLikeMe to access patient-reported symptom and treatment information and connect with others to guide their treatment discussions and decisions.

The partnership is PatientsLikeMe’s first with an academic health center. The companies will exchange and publish information on multiple myeloma on their websites and work collaboratively with PatientsLikeMe members to continuously enhance the health and education of people living with the condition. The organizations also expect to collaborate on specific research initiatives in the future.

USF Health, an integral part of the University of South Florida (USF), is a partnership between USF’s health-related colleges and schools and the USF Physician’s Group. “It is an honor as a cancer physician and scientist to become part of a larger community of patients with multiple myeloma,” said Damian Laber MD, Hematology/Oncology division chief at USF and senior member at Moffitt Cancer Center. “This partnership enables patients and their families worldwide to receive the most relevant and current medical information, and will enable us to learn as much as possible from patients so that we not only support them, but improve outcomes for others.”

The agreement is the newest in a series of oncology-focused partnerships for PatientsLikeMe designed to ensure that the patient voice guides cancer research, said Executive Vice President of Marketing and Patient Advocacy Michael Evers. “Every day, thousands of people learn they have cancer. More and more of them are joining our site to not only get information and support, but to contribute their health data for research. We’re excited to help USF Health members improve their day-to-day lives, and to partner with such a distinguished research and educational institution so that we can have an impact on people’s lives longer term.”

USF Health members interested in joining PatientsLikeMe can sign up at www.patientslikeme.com/join/usf.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 300,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 50 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blogTwitter or Facebook.

About USF Health
USF Health’s mission is to envision and implement the future of health. It is the partnership of the USF Health Morsani College of Medicine, the College of Nursing, the College of Public Health, the College of Pharmacy, the School of Biomedical Sciences and the School of Physical Therapy and Rehabilitation Sciences; and the USF Physician’s Group. The University of South Florida is a Top 50 research university in total research expenditures among both public and private institutions nationwide, according to the National Science Foundation. For more information, visit www.health.usf.edu.

Contacts
Kristy Andre, USF Health Department of Internal Medicine
kandre@health.usf.edu
813-300-9006

Margot Carlson Delogne, PatientsLikeMe
mcdelogne@patientslikeme.com
781-492-1039