14 posts from June, 2015

Getting to know our Team of Advisors – Letitia

Posted June 12th, 2015 by

You might recognize Letitia from her Patient Voice video and her PIPC guest blog, but did you know she’s also a member of the PatientsLikeMe Team of Advisors? Below, read what she had to say about living with epilepsy, her views on patient centeredness and all of her advocacy work.

About Letitia (aka Letitia81):
Letitia is a Licensed Mental Health Counselor in Florida and a National Certified Counselor specializing in mental health and marriage and family issues, who was diagnosed with epilepsy at a young age. Letitia consulted with doctors across different disciplines both nationally and internationally and did not find an effective treatment until she found out about epileptologists on PatientsLikeMe. Through consultations, she realized she was a good candidate for brain surgery and she underwent left temporal lobectomy August 16, 2012 and has been seizure free ever since. She successfully weaned herself off of Keppra this month under her doctor’s supervision.

Letitia is very passionate about giving back to others, and recently met a young epileptic girl and inspired her to undergo the same life changing surgery, and so far she’s met with great results. In addition to helping the young girl and her family, people contact her regularly from all over to consult about their or a loved one’s seizure condition and she’s always willing and delighted to help. Letitia is passionate about research and believes in the power of research to positively change the quality of life (mind, body and spirit), for those living with epilepsy and other chronic conditions.

Letitia on patient centeredness:
“It means that the treatment is individualized based on the patient’s (or research participant’s) unique condition/situation as well as their opinions regarding their health.”

Letitia on the Team of Advisors:
“Being a part of the team of advisors has been an invaluable experience! It has allowed me to work with other “rock star” patient advisors and PatientsLikeMe staff that are just as passionate as I am about changing health care, including research to be more patient-centered for all patients. This experience has also given me exposure that I did not imagine before to share my story, encourage, and inspire patients and caregivers. Additionally, I have been able to network with professionals from many disciplines about the value of the patients’ voice! I have heard from many patients and caregivers from different parts of the country and the world! They reached out to me with questions, for guidance, to thank me for sharing my story, and to share their stories with me. I am so humbled that they felt comfortable sharing their stories with me and looked to me as an “expert” for advice. I guess I should not be too surprised by this since I am not only a patient that can relate to their experience, but I am also a professional counselor. I have been blessed with the gift of showing empathy and compassion to others in my career. Finally, this experience, particularly working on the best practice guide for researchers fits nicely into my current professional endeavor of pursuing a Ph.D. in counselor education, with an emphasis on counseling and social change. Social change involves advocacy and creating innovative ways to improve humanity!”

Letitia on advocacy:
“I am very passionate about advocacy work! Advocacy has been a huge focal point in my role as a professional counselor. I am currently a clinical manager for a large mental health and substance abuse agency and I teach and mentor my staff about the importance of advocacy work. Advocacy is one of the many reasons I stay involved as a patient on the PatientsLikeMe website. Additionally, I have been able to partner with other organizations such as Partnership to Improve Patient Care (PIPC) and the US News & World Report to share my story with diverse audiences. Ultimately, these experiences have allowed me to help other patients and caregivers see the value of advocacy in patient-centered health care, and I am so grateful to be a part of this powerful movement!”

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Let’s talk about men’s health

Posted June 10th, 2015 by

On average, American men live sicker and die younger than American women. Men die at higher rates than women from the top 10 causes of death, and by the age of 100 women outnumber men eight to one1.

Sometimes men just don’t talk about their health problems. Or they might not go to the doctor or for their health screenings as often as women2. This month is National Men’s Health Month and it’s a time to raise awareness and encourage early detection and treatment of preventable disease among men and boys.

There are several ways to get involved and join in the conversation. If you’re looking for a place to start, here are a few ideas:

Join the Men’s Health Forum discussions
Men make up 29 percent of PatientsLikeMe – and 81 percent of these members are sharing about their conditions, tracking their symptoms and connecting with one another in the men’s health forum. If you’re interested in learning more, visit today.

Wear something blue
The Men’s Health Network (MHN) is encouraging everyone to wear blue and share their pictures with the #showusyourblue hashtag on social media.

Research the facts
Learn about Key Health Indicators, common men’s health conditions and leading causes of death on the MHN’s information center.

Check your resources
Here’s a great list of resources and things to do in June, courtesy of the MHN.

Listen to patient interviews
Several men have shared their experiences on the PatientsLikeMe blog – watch Bryan (IPF) and Ed (Parkinson’s disease) speak about their conditions, and listen to David Jurado’s podcast on life with PTS.

Share this post on Twitter and help spread the word for Men’s Health Month.


1 Life Expectancy data is from CDC/NCHS, Health, United States, 2013
2 http://www.menshealthnetwork.org/library/menshealthfacts.pdf