Written By: Patty Regan- Lyme Disease Advocate & Board Member
I’ll NEVER forget the screeching sounds coming through the phone line as I struggled to listen, understand and comprehend what my friend, Rebecca Roll was going through when her Husband, Chuk Roll was first sick and later diagnosed with Lyme Disease. They had recently found out that they were pregnant with their 2nd child and had the unknown before them.
Chuk was getting worse by the day and the despair in her voice not knowing IF he was going to make it was enough for me to attend one of their Support Meetings when the group started meeting with as little as 5-10 people.
I remember silently sitting in the room and listening to the stories people were talking about. Every story started and ended the same. These individuals, relatively healthy all had an onset of symptoms that were strikingly similar and there weren’t any Doctors in this area to treat them. I remember thinking, ‘Is this a dream?’ ‘How could this many people (at this time a meeting of 20-30) ALL have the same story with NO resolution?’
That is when I KNEW I had to do something!!
I was not in a very good place in my own personal life and I was suffering from anxiety & depression. I took some of the worst things that happened to me and started to turn them into positives. I knew that it was my calling to help others. Mainly because giving selflessly to others was ultimately helping my own issues in return. There is something magnificent about Volunteering your time and how self gratifying it can be that people who have once felt so helpless can turn that fear into HOPE! Hope for change, for help, and MOST importantly for SUPPORT!
That is where I began my self education journey regarding Lyme Disease and Tick Borne Illnesses. I began brainstorming on how I could help this cause and really further the mission of the group. Rebecca had already come up with a name, FB Page and a Logo for Lyme WNY that her sister, a local Art Teacher created. That is where the green Buffalo and Lyme WNY started.
As a retail store manager at the largest shopping center in Buffalo NY, I inquired about the opportunity to host a Walk at Walden Galleria and they were 100% on board. Once the idea was presented to Rebecca and the group the rest of our history began to unfold.
We held our First event, Lyme WNY Stomps Out Lyme Walk and it was a HUGE success. The amount of donations, sponsorship, volunteers, funds raised, assistance provided to Lyme Warriors and Their Families was overwhelming and that is when we realized we were NOT going to STOP until we were heard and started to see change.
Fast Forward to 2020 and I’m amazed at all of the accomplishments our group has made in such a short amount of time. We have gone near and far to make the mission of our group a success with 4 huge events that we have personally held, provided medical grants to afflicted individuals, attended other Lyme Disease Galas, Conferences, participated in News/ Media coverage, attended Press Conferences with Local Senators, partnered with local Legislators to Proclaim May as Lyme Disease Awareness Month in Erie County, assisted in Task Forces that are part of NIH/ HHS/ IDSA/ ILADS, participated in NYS School Nurses forums, participated in school assemblies educating students on safety and prevention while spending time outdoors, networked with several other companies who share the same passion as us, and MOST importantly are able to share these success stories with all of our followers.
The fact of the matter is- When I met Lyme Warriors they were looking for a glimmer of hope as mainstream medicine and diagnostics were failing them. I knew that it was MY mission to not only HELP those in NEED but to be the Voice for CHANGE when theirs could NOT be heard.
Each and every Lyme Warrior I have met to date, has left a very strong impression on me. I wish our meetings and introductions happened under different circumstances. Yet, I wouldn't write these chapters of my life any different.
My Hope is that with everything going on in the world that we may see a shift in paradigm that will benefit immediate & future diagnostics, serology and treatment so that all Americans feel they are understood, treated, and properly diagnosed with effective surveillance nationwide in regards to Lyme Disease and Tick Borne Illnesses.
As I always say…
Love and Lyme