Social Ambassador Profiles

These amazing people have taken on the task of being LymePowerOfUs Social Ambassadors. They are dedicated and passionate and want to transform that dedication into actions that increase awareness of Lyme disease, raise funds to train physicians and support LymeTap, and put an end to the growing epidemic of tick-borne diseases. Their stories are sometimes heart wrenching, often very sad, but more often than not filled with inspiration and hope. These are the faces and stories of people that are making a difference. Find out how you can join them.

Donna Falcone
About Donna

Diagnosed in 2008 after many incorrect diagnosis I have played an active and proactive role in my own treatment, recovery, and raising awareness. My treatment for Lyme, Bartonella, and Babesia has been effective but difficult and is still ongoing though I am much improved. My son was treated for two years for Bartonella and Lyme that went undiangosed for 4 years due to an erroneous mono diagnosis (no bloodwork was done - it was a clinical diagnosis - ironic isn\'t it?). I have already been doing a lot of the things that a social ambassador does and so thought this was a natural next step. In fact, the reason I found this page was that I was looking for a badge for my blog so that others could easily connect to ILADS. What\'s that they say? Seek and you shall find!

Clarks Summit, Pennsylvania, US

Elise Townsend
About Elise

I was diagnosed with chronic Lyme Disease early 2016. For months I had thought I was going crazy until I was tested specifically for Lyme. The chronic fatigue, migraines, and joint paints became too much to handle. Finding out that I had Lyme disease was bittersweet. I was relieved that I had an answer but unsure as to why this had to happen to me... and then it hit me. I am a firm believer that everything happens for a reason and I want to have a purpose within the Lyme community. Having a support system of people who know exactly what you\'re dealing with is has reassured me that Lyme is something I can get through. I need to make good out of my situation. I want to spread the word and become a social ambassador because that is what I have set out to do.

Scottsdale, Arizona, US

Emily Keffer
About Emily

Hello! I am a 26 year old nurse from West Virginia. I was diagnosed with Lyme Disease in August 2014 when I was receiving treatment for a 10 year long Opiate addiction. The Physician that diagnosed me said that I have had the disease since I was 5. Since then, I have learned a lot about Lyme and I have witnessed many people who are in wheelchairs from the disease and cannot get the proper treatment because they lack the financial resources. I want to help raise money and awareness about the disease.

Ravenswood, WV, US

Emily Champagne
About Emily

My Lyme journey has been 15 years and counting. August of 2001, on vacation in Southeastern MA, my mom woke up will a massive bulls-eye rash across her chest. Once home, her Lyme test came back positive and 30 days of treatment followed. 8 years later she suffered two isolated grand-mal seizures that are still a mystery but assumed to be from Lyme spots on her brain. In May of 2013 I was diagnosed with an autoimmune disorder and started treatment. In January of 2014, I was 16 and at my wits end, when we finally found out that on that same trip back in 2001, I was also infected with Lyme and many co-infections. I have been on a roller coaster ride of treatment and doctors since then. Nowadays, I am still undergoing treatment and working with doctors to fix the long-term and permanent effects of these illness and treatments. I am taking back my life from Lyme by creating my own journey to wellness. I am interested in becoming a ILADS Social Ambassador because when I started my journey there was no one to turn to that had battled this themselves, I felt alone and terrified. I have a fire burning in my heart to help those who are feeling alone and scared, and educate the rest community to end the Lyme epidemic.

Weymouth, Massachusetts, US

Erin Sullivan
About Erin

I have Lyme disease, Bartonella, Babesia and Mycoplasma. I have been actively treating them since January 2015, but have potentially been sick since 2006. My goal is to raise awareness and help prevent anyone else from going through what I\'ve been through and continue to go through. If I can help one person to catch and treat Lyme disease or co-infections in the early stages, then it is worth sharing my story.

Cranford, NJ, US

Diane Larson
About Diane

Our family has been hard hit by Lyme disease. In our immediate family myself, 47, and my husband and our 17 year old daughter have been hit. She has been hit especially hard. Her journey thus far has included over six years of physical and emotional symptoms, tons of doctors and hospitals, medicines and supplements, even a wheelchair and PICC line. Prior to diagnosis she endured Botox shots for migraines and an inpatient anxiety program. My sister and her daughter, 9, have been diagnosed. My parents, both 72, have both been diagnosed. My other niece was diagnosed with acute Lyme and treated. Thus far she appears to have avoided Chronic Lyme disease. Through our daughter, and lots of reading, we have become familiar with so many sad stories of others struggling with this awful diagnosis. Some of our more frustrating moments have come about due to the lack of knowledge in the medical community, the issues with the CDC and a lack of consistent protocol. We are lucky to have a good Lyme doctor, though we do travel about 5 and a half hours to see him. I know this is a short visit compared to some. This disease needs more research, the support of the medical community and a consistent protocol! Thanks for all you do!

Waterloo, Iowa, US

Crysta Icore
About Crysta

I have been diagnosed with Lyme for about 12 years after spending most of my adult life trying to understand what was happening to me. I have been so lucky to have a great support group and team of doctors who know how to keep on trying to find ways to ease my symptoms of Lyme Disease. I have been blogging, Facebooking, and Tweeting about Lyme for years. Now I want to help take that to the next level and do more!

Snoqualmie, Washington, US

Janine Collins
About Janine

I am recently diagnosed with Lyme, but I believe I was infected 4 years ago while hiking.

East Winthrop, Maine, US

Iain Kerr
About Iain

Had rash in 95 but GP didbt know what it was so ignored it

Perth, Scotland, UK

Grace Crowder
About Grace

I am currently 16 years old and entering my junior year of highschool. I have been battling Lyme for over a year now. In August of 2014 I started to become very sick- loss of apetite, sharp abdominal pain, unexplained weight loss, etc. I was constantly in the hospital either in the ER or for a scheduled appointment. I had to get many tests done such as a CT scan, x-rays of my stomach, an endoscopy, and several blood tests. Everything showed I had something wrong with me, but it didnt show what was causing it. Finally in October of 2014 my pediatrician decided to test me for Lyme. I came up negative for CDC standards, even though I had a few bands and three co-infections. She then sent me to a Lyme Specialist in NYC. There, the doctor retested me and the test came back positive for chronic Lyme disease. I have been under my doctors care since November. I am interested in becoming an ILADS Social Ambassador because I think more people should know about Lyme Disease. It\'s crazy how many times I\'ve had to explain what it was when people asked what was wrong with me.

Oradell, New Jersey, US