Person of the Month-May 2019
The EPIC Foundation proudly announces our Person of the Month for May 2019, Ashley Laxton. May is Ehlers-Danlos Awareness Month. This month-long observance of awareness, education, outreach, and fundraising for the Ehlers-Danlos syndrome and related disorders first began in 2006. Ashley Laxton works tirelessly to bring awareness to this illness as well as several other illnesses. Her work, individually, as well as her work with The EPIC Foundation positively impacts the chronic illness community in ways that cannot be put into words!
Ashley serves a number of chronic illness communities outside of The EPIC Foundation, through the support groups that she runs. She was a strong advocate long before becoming a Director with The EPIC Foundation. Her advocacy has a far reach. She started with something close to home for her – a hysterectomy support group. When Ashley had her surgery, she discovered that there was so much bad information out there. That particular group has been around for almost 5 years now and has close to 10,000 members. Counting the people who have come through the group over the years, Ashley has probably reached five times that many. Even still, Ashley says, “We’re not the largest support group out there, but we’re not trying to be. We strive for a quality environment that is safe and drama-free”.
Later on, Ashley opened support groups for several other health issues that she faced over the years. Some of the groups still exist. However, others were eventually phased into other groups she runs or were closed down due to her finding better resources for her group members to utilize. Ashley always strives for the best environment for her group members. She has her members’ best interests at heart so if she comes across a group that is better suited for their needs; she directs them to those groups and takes a step back. Ashley says that she “doesn’t need to be the only person helping the world”.
Ashley has a powerful story that is inspiring to anyone facing a chronic illness journey. She had a lot of medical challenges in her life, starting in infancy, which led her to have many surgeries – MULTIPLE surgeries for endometriosis (starting at 13), multiple oral surgeries, tonsils, appendix, and gallbladder. Ashley also has Ehlers Danlos Syndrome which throws a wrench in the mix of things, too, because it makes her organs and tissues more fragile.
Her entire life, Ashley struggled with her health. Starting from infancy, she had many health issues including stomach/digestion issues, needing special diets or foods, migraines, asthma, bilateral Meniere’s Disease, Chiari Malformation, MCS, MCAD, Ehlers Danlos Syndrome, Endometriosis, and horrific full-body pain (from the EDS) that would leave her sobbing. Her health continues to get more complicated as she gets older.
Ashley was misdiagnosed several times throughout the years due to doctors not taking her seriously. Many of them told her that she was too young to possibly have the issues that she was describing. Due to her experience of having doctors who refused to listen to her when she tried to explain what she was dealing with; she was led to do a lot of research about her own issues and the complications and comorbidities they present. Ashley understood the value of self-advocacy and she began to strongly advocate for herself. Eventually, during her journey, she was able to find some amazing doctors who helped her clear out old misdiagnosed labels and get the correct diagnosis for the symptoms she experienced.
Ashley had to take a leave of absence from college after she spent almost one entire semester sick in bed. Another semester, she ended up needing surgery yet again for endometriosis. This was supposed to be a short-term leave, but now twelve years later, she still doesn’t have the energy or ability to go back. Ashley, at one time, had the goal of joining the FBI, but she realizes that this is not realistic with her health issues. A lot of people think Ashley would do a lot of good by going into the medical sector. However, this would require her to close her support groups which she believes is a really high cost.
Ashley acknowledges that her back story is long and super complicated. She generally doesn’t talk about it extensively in public forums because she doesn’t want to elicit stress for others. She believes that it may hurt those who are trying to make a better life. She embraces her chronic illness journey with humility and grace. Additionally, despite all that she has been through; Ashley has such sensitivity and empathy towards others in the chronic illness community!
Ashley’s incredibly complex past has left her uniquely suited to help other people and she uses what she has learned to help others. She believes that her mission in life is to help as many people as she can. So, she takes her first-hand knowledge of her health and what works (or doesn’t work) and tries to help others avoid the chaos and struggle that she went through.
To help her mind and her sanity, Ashley finds refuge in her favorite authors, favorite TV shows, and creating new or interesting twists on cosplays. She loves to imagine and sketch out concepts, and even put together a few things here and there, although her “low energy reserve usually means it’s more tribute dress-up than actual full-blown cosplay”
What motivates Ashley to help the chronic illness community is her own struggle with being taken seriously. Growing up, she was (and still is) what is now called “medically fragile”. Ashley says, she “can catch a bug from someone sneezing on the other side of the grocery store”. She tends to stay sick a long time if she gets sick.
Ashley started as an advocate in the chronic illness community in her teens. “The Salty Spoonie” persona/blog has been a work in progress for a few years now, largely conceived after she wrote pieces for people in the communities and support groups she was active in and after she started making jokes and finding humor in her health journey. She launched her “brand” – “The Salty Spoonie” – on Facebook last year. As her blog finalizes and launches, she will also be mirroring blog posts into the page and its social media counterparts on Instagram and Twitter.
Currently, Ashley is working on compiling all of her written pieces, about things we’ve dealt with into one spot, so that people faced with these kinds of issues don’t feel alone. Ashley runs a hysterectomy support group, a Gastroparesis group, and several more groups.
Here are the links to two of her groups:
Hysterectomy Support: Here to Help – www.facebook.com/groups/hysterectomysupport
The Salty Spoonie – www.facebook.com/thesaltyspoonie
Within The EPIC Foundation, Ashley’s role is that of a Social Media guru, as she jokingly calls it. Ashley is the Director of Social Media. She also co-chairs our design team with Jenifer Williams, The Director of Patient and Caregiver Support. Through these positions, she raises awareness of our Foundation, the support structures we have available for patients and caregivers, and assist in the continuing growth of The EPIC Foundation. Most recently, they undertook the challenge of opening new support groups for EPIC, specifically for the different needs they wanted to help our members and followers with.
Growing up, Ashley’s motivators/role models were all science fiction or fantasy characters. Between being sick a lot (and missing school a lot), and not really meshing well with kids her age; she spent a lot of time reading books and watching shows.
Some of her biggest “role models” actually come from the Star Trek universe – Seven of Nine, Data, Troi, Janeway, Jadzia Dax. These are all strong women who faced a lot of challenges, but didn’t let it keep them down, and ultimately found ways to push forward.
As for a real world role model, Carrie Fisher had a lot of impact on Ashley’s life, not just for the role she played in Star Wars, but also as a real person who was so open and honest about her struggles with her issues, and how she approached them without reservation or shame. She made Ashley feel like it was okay to talk about the hard things without worrying about what other people thought about it.
Ashley wants people to know that your doctors are supposed to work with you and support you in your struggle with your illness or issue. She tries to reach anyone she can to encourage them to become educated on their conditions with the latest information and treatment options. There is far too much bad information, or worse, pseudoscience that surrounds the chronic illness community. Far too often, people are promised a “cure” from some barbaric medication or non-regulated “lifestyle supplement” that either puts them into financial crisis or negatively impacts their already fragile health.
Ashely believes that anything that a patient considers doing should be FDA inspected or regulated, or recommended by an MD or PhD familiar with their specific medical health history. She says, “don’t take medical advice from someone who took a 3 hour course on some product they are trying to sell you, who happens to have a business card calling them a coach”.
At The EPIC Foundation, our slogan is “Together, WE are EPIC!” Ashley says that she is quite fortunate to say that she has a lot of people who support her and motivate her in her plans for the future and in her ongoing journey with chronic illness: her best friend Samantha; her “purrfectly” loving kitties, who always make her feel better; the awesome people who raised her (and still rearrange their lives to take her to surgical or procedure appointments), Pat & Ron; her friends Tracy, Andrew, Christy, and Allison; her amazing online friends who are there for her whenever she needs to vent or cry – Em, Kjetil, Jess, Rob, Kevin, Melissa W, Cara, Matthew, and Tanya, Kathryn. She says there are so many people in her life who are supportive; she cannot possibly name them all! However, one person in her life stands out, very much so, and this is her husband, Rich! Ashley’s loving husband, Rich, supports her in her goals and helps fuel her dreams! He is the one who told her that she should start the “Salty Spoonie”. Rich even suggested that Ashley try her hand at comedy about her health. This is something that Ashley truly cherishes and says she has immense gratitude for!
During this very special month of May, Ehlers-Danlos Awareness Month, The EPIC Foundation is fortunate to give honor to Ashley Laxton who finds passion in her purpose to give to others and help them! We are elated to have obtained Ashley as our Director of Social Media! Ashley is a vital part of our EPIC family! Thank you, Ashley, for everything you give and for everything you do!
Together, WE are EPIC!