I became ill in 2001 and over 4 years saw 51 specialists that could not diagnose my illness. I was handed a Medline study from Christopher Reeves' Neurologist and was told to find the surgeon that performed that study. It lead me to Pittsburgh & Dr Peter Jannetta, Godfather of Modern Neurosurgery. He saved me from becoming a quadriplegic & worse. I never imagined I would develop multiple Rare Diseases at 31 yrs old, I had to learn to live a new limited life and the only way to start was with knowledge, then with helping others when I was well enough, and I have never stopped. I am a Leader in the Rare Disease Community, a Healthcare Activist, and Lobbyist. I have been fortunate to work with 1000's of Rare Disease Patients, Health and Disease Organizations and Foundations, Healthcare Stakeholders, and learned from them all. Now I try and improve Healthcare one day and project at a time.
I am a nurse and respiratory therapist. My daughter has a progressive heart disease and while being her healthcare support I have found myself being an advocate for many others. I am now doing this as a career. My mission is to be able to accompany the client through their illness or wellness to a meaningful experience.
Office visit companion
Care plan review and advising
Locating specialist for needed care
Audit medical billing and/or intervention as requested
Coordinate home care to aid in keeping client grounded in their environment
Evaluating facility needs if home care is not feasible
Acquiring durable medical equipment when applicable
Strategy, management, monitoring, creation, and scheduling of social media channels and applicable content.
Editor; graphics, overall editorial calendar, and management of all blog authors.
Creation of social media corporate strategy, as well as social media training modules for internal education and overall brand vision.
Management of paid search, paid social media, goal conversions, and SEO/SEM with Google AdWords, Google Analytics, and Social Media Advertising platforms.
Content Management, editing, and creation for external-facing website; proficient in Sitecore CMS.
Digital marketing analytics strategy, reporting, and recommendations with the following tools and tactics: social media metrics, paid search metrics, email marketing metrics, website metrics, from Google Analytics, Google AdWords, Hootsuite Ads, Exact Target, and Facebook Ads Manager.
Kathleen, 33, is an author with Crohn’s Disease and various other chronic illnesses living in Scotland. Since diagnosis she has worked tirelessly to raise awareness of inflammatory bowel disease and help others come to terms with their condition. Kathleen was diagnosed with Arthritis in 2008 and Crohn’s in 2009. She has since endured countless hospitalisations, tested all medications old and new, undergone endless tests and flare-ups. Her blog, 'Crohnological Order' covers everything from relationships, mental illness and all with buckets of honestly and humour. Kathleen first book was published in 2016 and has been a huge step forward in opening up the conversation around IBD across the globe. She is a passionate health advocate and writer, constantly striving to show that there is more to life than your illness.
I would like to speak to groups about staying positive during a loved ones fight with cancer. I have Depression and Anxiety and want to openly speak about it, helping others. I also have Rheumatoid arthritis for 20 years.
Leslie Rott has a PhD in Sociology from the University of Michigan and a Master's Degree in Health Advocacy from Sarah Lawrence College. She authors the blog Getting Closer to Myself, and has been active in the patient advocacy community since her diagnosis with lupus and rheumatoid arthritis in 2008. She has written for a variety of health sites and has attended a variety of conferences, including as a speaker at Stanford Medicine X.
She currently lives in Michigan.
Health Activist / Patient Advocate / Speaker / Patient Engagement / Brand Ambassador
Currently representing the Lupus community as the "Face of Lupus" for the International Pain Foundation.
My story "Living Well with Lupus" isa chapter in Jan Oldenburg's book "Participatory Healthcare" about patient engagement in today's healthcare system.
Presented at the 2016 "Connected Health Conference" for the "Patients as Innovators and Partners" panel.
The British Medical Journal published my article on the impact of Social Media in Patient Communities.
Represented the Lupus Foundation of America and the Lupus Research Institute as a empowered patient advocate on Capitol Hill.
Actively participated in advocacy in person & online.
Shared my story at #TEDMED on stage "Great Challenges" ambassador
Presented iat Lincoln Center on Community Engagement as a Brand Ambassador.
Moderated a panel of patient activists and shared my Lupus journey at the 92nd Street Y in New York City.
I have extensive knowledge of the UK health system for both patients with Inflammatory Bowel Disease and Ostomies.
I have a large online following through Facebook, Twitter & Instagram and not only blog for associated organisations & companies, but offer one to one support to many patients.
I have a passion for pre & post op support, with the aim of reducing mental health issues further down the line.
The one to one support, in-depth information and suitable guidance for pre & post op ostomy patients isn't being sufficiently provided. The NHS is so stretch and can often only care on a clinical level. Patients in this area require much more from the service, so I voluntarily bridge the gap in my local area & online.
I'm happy to do public speaking or discuss my journey, if in context.
A dedicated licensed social worker in New York City and active advocate with the Arthritis Foundation with a passion for sharing her story as a patient living with Juvenile Idiopathic/Rheumatoid Arthritis since a toddler and being a voice for children and young people struggling with navigating their lives and medical care with rheumatoid arthritis including addressing the shortage of pediatric rheumatologists across the nation. She has advocated on Capital Hill and her state of New York's capital as a voice for patients. Additionally, a certified yoga instructor and a recent graduate of the Yoga for Arthritis teacher training program that she is bringing to her current clients and developing an accessible program with her current employer.
I am available for speaking engagements, patient panels, writing, fundraising, advocacy, blogging, and much more.
Hetlena has been integral in bringing lupus to the forefront of awareness in South Carolina. Her main goal is to raise awareness of and advocacy for lupus patients, like herself, in South Carolina. Hetlena now serves as the Chief Volunteer Officer of the newly transitioned LFA South Carolina Community Partner (LFASCCP). She leads and coordinates the training of support group leaders in the state of South Carolina. Her work with lupus sparked a partnership with the Institute for Partnership to Eliminate Health Disparities (IPEHD) Arnold School of Public Health of the University of South Carolina to spread the word on the development of a South Carolina Lupus Registry. Hetlena’s flagship company, The Lupus Liar, allows her to educate, advocate and raise awareness about lupus as a highly sought after speaker, critically acclaimed author, coach, presenter and trainer. She is well-versed in data management, community awareness strategies, and lupus education presentations.
I am a patient, advocate for OA,& AvascularNecrosis/Osteonecrosis. Being diagnosed in 2014 set me on a different path than being an optometric tec and apprentice optician.
After I had to hang my white lab coat up a lot sooner than i would have liked was very hard for me as I loved seeing patients , helping them.
But having avn in knee as well as OA and spondylolisthesis in my l5 s1 and factor v leiden I set out on a new journey
That new journey was becoming a group founder of my support group for avn/on.
I found many could not find doctors knowlegeable in this rare disease, so i set out to call doctors in every state to see what orthos were experienced in avn and also thought out of the box as far as treatments vs just waiting until a patients bones collapsed and then giving them a joint replacement ..I also wrote a booklet on avn/on I give to our members free
AVN/ON had no awareness ribbon so i created it also. I never want patients to feel as if they are in this alone .
I've been writing and consulting about diabetes for over eight years. After being diagnosed, in 2008 I started a comprehensive research project to understand how diabetes would affect me, my family and how I could also help others understand my findings. This led to starting four blogs all devoted to diabetes for kids, adults, seniors and even pets. At one time, we had over three million followers, a 6 day a week talk show on Blog Talk Radio for over two years and we received numerous awards and proclamations from the City of Clovis, California for our work online and in the community as it relates to diabetes. We also hosted a Livestream event for 4 years where we had over 250,000 attendees.
I am a passionate advocate and activist for people living with musculoskeletal conditions, working with a number of national and international organisations as a guest speaker, freelance consultant and adviser. I am also a doctoral researcher in child and family health in the United Kingdom, where my research interests include self-management in children with long-term conditions and public involvement in research. I hold a first class BSc (Hons) degree in Biomedical Sciences with Industrial/Professional Experience.
I am available to speak at events as an empowered patient and early career researcher. I am also available in a consultant capacity to shape research proposals, study designs, plans for public involvement and for engaging members of the public in science and medicine. I am also experienced in using social media, having presented lectures and facilitated workshops on using social media for health purposes.
In 2014 I medically retired from my position as Executive Manager, Suncorp Bank, a role I thoroughly enjoyed. However my body decided to work against me & I was diagnosed with Rheumatoid Arthritis & and a complex idiopathic rare disease affecting my bones & other organs. Life goes on & I am finding a new normal, grateful that I had a successful career in Financial Services for 30 years before illness struck.
Early retirement has re-ignited my love of writing & on my good days I now blog about my journey through the maze of living with an unpredictable complex disease. I also founded an International Chronic Illness Facebook Support Group in January 2017. Medical Musings with Friends has 1400 members & grows daily. We provide a safe place to share the good & bad days of living with complex disease with others who provide genuIne support & understanding.
I am also an ongoing contributor with The Mighty.
As a person living with the migraine disease, cluster headaches, fibromyalgia, and rheumatoid arthritis I've learned the skills, confidence, and knowledge needed to play an active role as a patient advocate. Twice, I lobbied on Capitol Hill as a migraine and cluster headache patient during Headache On The Hill. I've also had the opportunity to appear on HuffPost Live and Al Jazerra, where I spoke openly about my neurological disorders. Besides being a full-time patient, invisible illness advocate, and contributing writer for the Today Parenting Team; I am a caregiver to a teenager living with abdominal and chronic migraine. Due to my son's unpredictable health, I even learned how to work efficiently with our school district to ensure my teen has the appropriate academic accommodations.
International Public Health Manager, with over 10 years’ experience living and working on two continents. Passionate about public health and patient engagement. Uses innate ability for creating links and motivating people across levels and cultures to develop opportunities, drive results and solve complex problems. Conversant in French and Spanish.
* Patient Engagement
* Health (HIV, Immunization)
• Writing and Editing
* Budgeting and Administration
* Strategic Planning
* Training and Education
As someone who has been living almost my entire life with chronic illness, I have found myself most dedicated to raising awareness, becoming a patient advocate as well as connecting with other patients around the world. My background in writing and creative skills have helped me use social media as a successful way to create communities of patients in both disease specific and general chronic disease forums. My contribution to the community as a whole includes personally written blog posts, positive and uplifting messages, informative articles pertaining to living life with chronic disease, sharing my own daily life hurdles and achievements and donating time to help other organizations with written and graphical content.
_**Life isn't about waiting for the storm to pass, it's about learning to dance in the rain when you live with chronic illness or pain.**_
Having been diagnosed with rheumatoid arthritis in 2008, I have put my considerable professional communications skills to use to better educate and build community with those with a chronic disease. My professional background gives me the ability to manage project, meet deadlines and work toward common goals. My experience in the chronic illness community provides an in-depth knowledge of the challenges facing both patients and the healthcare community. I have won numerous awards for my patient communications and serve on various patient advisory boards helping facilitate a better outcome for all stakeholders.
I am educated in Health Information Management with a minor in Human Services. My specialization is in mental health, but I also work with disabled students My current position involves mentoring and intake under the direction of a Licensed Mental Health Counselor. I have experience with movement disorders, mental health for first responders, FERPA and HIPAA. I also am a certified coder/biller. My main focus is to direct the individual to the proper resources which are available.
I am a freelance journalist specializing in researching and writing about health related issues. My interest in this field began when I was diagnosed with a little known chronic blood disorder (ITP) and had to do the research to find out exactly what I had. I am also a full-time caregiver for my disabled husband and have interviewed health professionals and other caregivers to succeed at this task.
I have used my skill at searching out answers to write articles for newspapers, blogs, websites, etc on various health related topics.