Matt is a 33 year old Navy Vet. In the Navy, he was part of a team of first responders to the Fukushima-Daichi Power plant melt down after the Tohoku earthquake and tsunami in Japan 2011. After this exposure due to the nuclear melt down, he began to experience a myriad of health problems that have largely been a mystery until the past few years when he was diagnosed with lyme disease, mold toxicity, and Chronic Inflammatory Response Syndrome (CIRS).
Before he was diagnosed, Matt always said that he would be the loudest person on the internet, so that if anyone else was in his shoes, they would be able to find the answers that he spent years and countless doctors visits trying to find.
Matt started his Instagram account @chronicallymindfulmatt to educate others about chronic illness, and to help foster a community with others who share his struggles. He also talks about mental health issues and sobriety, as he has been sober for 4 years now. Before and during his worst pain symptoms, Matt started leaning heavily on mindfulness, breath work, and meditation, which he credits heavily with helping him get through some of the darkest days. Along with other topics, he talks about mindfulness and the power of taking care of your mental health.
Matt and his partner Emily moved to Colorado from Washington state in 2019 when they found out he had mold toxicity. They live with their dog Polar, and two cats, Sammie and Salem, along with a few rogue plant babies that they try really hard to keep alive.
My name is Renée, I’m 32 and I’m from the Netherlands.
On the 12’th of March 2015 I got hit by a car as a pedestrian. The car was driving 60, launched me in the air and my body dropped back on the road at least 20 meters further. My entire life changed within just a fraction of seconds and it’s not what I imagined for my partner and myself. It’ll never be the same anymore. It’s not only my trauma but also my partner his trauma, whom is now my care giver. I had a near death experience that day and am very lucky to be able to tell my story.
In hospital they diagnosed me with a large horizontal skull fracture on the back of my head, which basically split my skull in half. Next to this I had several smaller skull fractures, right eye socket, rockbone, ankle, 4 pelvic, pubic and lower back fractures. A dislocated jaw, two types of cerebral hemorrhages. The entire right side of my face had gotten 100% paralyzed and more.
This trauma left me to learn how to live an “unfixed life” with a long list of chronic and mental illnesses. I’ll name a few; Traumatic Brain Injury, Seizures, Facial Paralysis & Synkinesis, Trigeminal Neuralgia, Chronic Migraines, Cluster Headaches, Fibromyalgia, Nerve Damage of multiple Nervous Systems, Tinnitus, lost ability to taste and smell, (C)PTSD, Depression, Anxiety, Psychodermatology, Body Dysmorphia and more (if interested you can read about a my illnesses on my Instagram)
Even though this is a life changing event which affects literally every aspect of my life, I wouldn’t change a thing. I’ve always been a highly sensitive person and an empath but this experience showed me how strong I really am. It changed me for the better and enhanced all my good qualities even though this is an ongoing grieving process for the person I could’ve been and how the life of my partner and myself could’ve been.
I’m now very passionate advocating, raising awareness and educating about chronic and mental illnesses. I feel it’s my duty to do so and it gives me the feeling of having purpose in life. I love to connect with likeminded people and support each other in any way I can in hopes to make others feel less alone, heard and seen. I have lots of personal contact with people within the chronic ill community and made friends with people all over the world, which I’m very grateful for!
It’s such an honor that I may call myself a Lyfebulb Ambassador and be a part of the Lyfebulb family! Lyfebulb does an amazing job connecting patients, care givers, charities, innovators, professionals, medical field and more together to make changes for the better. Thank you from the bottom of my heart. Much appreciated.
I’m wishing everyone all the best and am sending you all lots of love, light, positivity, strength and spoons. Feel free to DM me when you have any questions, would love a listening ear or anything else.
Mary Pettigrew is a freelance writer/blogger from Dallas, Texas. Her writing is multigenre in nature, with a focus on poetry, prose, essay, narrative interview. She is an ambassador & patient advocate for multiple sclerosis (MS), chronic illness, IBS/D, mental illness & disability rights. In 2014, Mary founded MSpals, an online support organization which has a global outreach on Twitter, Facebook & other platforms. In conjunction with MSpals, Mary created a group geared specifically for those with chronic illness & disabilities to post/share art, music, writing, etc. The group is called “Creative Expression” & can be found on Facebook.
Mary is active with the NMSS (National MS Society), HealtheVoices, WEGO Health and other patient leader/ambassador platforms.
In 2003, after suffering with symptoms since the early 1990’s, I was diagnosed with Multiple Sclerosis. As a high school teacher, I educated my school community and raised awareness so much that my MS Walk team consisted of upwards of 400 walkers. In 2011 I learned that I had broken at least 1 vertebra (line due to a fall thanks to MS) and underwent spinal fusion and decompression surgery, and continued to educate my community. Sadly, I became unable to perform
My job anymore and became disability retired in 2014. As I struggled to regain my strength and walk again, I found my way to meditation as a coping mechanism for the extreme sadness I felt, and the depression that was all encompassing. As I began to regain some strength I also incorporated light yoga to keep my body moving and my brain mindful. At the end of 2016 (12/30 to be exact), I was diagnosed with breast cancer. Just like everything else in my life I put a smile on my face and did what I had to, and today I am more than 4 years cancer free. During it all I leaned on yoga and meditation because they are the best non-medicinal tools I know. I even became a yoga teacher so that I could share the benefits of the practice with others because I know first-hand how well it works. Just when I thought I had been given all that I could handle, I was then diagnosed with diabetes in 2018. While I certainly have had my share of obstacles, never once have I asked “why me?”. What I always say is “why not me?”, because I am no better or worse than anyone else and I clearly am swimming in a very shallow gene pool. One thing that has been constant for me is helping others, whether it has been advocating at doctor appointments, helping navigate the difficult waters to SSDI, teaching free yoga classes, or simply talking on the phone with those who need help. From where I stand, despite it all, life is incredibly sweet and I am grateful for every single day.
Ella Balasa is a patient advocate and a person living with cystic fibrosis. Having a biology background, she is an advocate for the development of novel therapies for the treatment of antibiotic-resistant infections. She has spoken publicly about this issue as well as relaying the value of patient voice in research – most recently at the FDA and healthcare conferences. She believes in the importance of engaging patients to be active participants in healthcare by empowering and educating them to collaborate with stakeholders to improve disease outcomes. She has become a professional patient voice in research contributing to clinical trial development, research prioritization, developing patient engagement initiatives. Ella is also involved in the CF community through being a director of the US Adult CF Association and through her passion for writing. She writes about her research and healthcare experiences and introspectively about the hardships yet triumph that comes with living with a chronic illness. She has been published on numerous platforms including MedPage Today, HuffPost, and in Pulmonary Therapy Journal. Through opportunities working with healthcare organizations and sharing her journey through writing, she aims to affect the healthcare landscape to promote self-advocacy to patients and valuable insights to organizations
Dawn Morgan was diagnosed with Multiple Sclerosis when she was 25 years old. Little did she know two decades later she would become a bold patient leader, podcaster, and advocate. Dawn is the cohost of the Myelin & Melanin podcast where Dawn and her cohost interview patients, well known MS specialists, award winning authors, musical artists, actors, and vloggers who are themselves living with MS, or have a unique perspective on the condition and its community. With over 45,000 unique podcast downloads she strives to spotlight the varied and often unheard voices of those within the MS community. Throughout her journey, Dawn’s work has led her to be part of patient advisory committees, an advocate for women’s health overall, partner to Shift MS and Healthline. Dawn has also been featured in publications such as Well+Good, WebMD, Momentum, and Brain & Life, and MS International Federation global face of MS YouTube campaign. Despite her diagnosis she feels that MS has made her a better and stronger person. Dawn is dedicated to using her platform to amplify the many voices of MS.
Julie A. Stamm was diagnosed with Multiple Sclerosis (MS) in 2007. Following her diagnosis, Julie made it her mission to educate, advocate, and support others battling the disease. She works tirelessly to help lessen the burden each patient has to bear. Her efforts have given her the opportunity to work with physicians, patients, and foundations across the Globe. After the birth of her son in 2016, Julie shifted her focus to supporting the children of parents with a chronic illness. Her children’s book entitled “Some Days We….” was created to normalize differing abilities and amplify how each of us can thrive in spite of the challenges. The movement she has created has changed the apologetic tone and transformed the child and parent’s experiences into uplifting stories that highlight the patient’s resilience.
My name is Wendy Riese. I am a mother of two children and a New York City public school teacher. I enjoy spending time with my family and friends, dining out, traveling, and exercising. I was diagnosed with psoriasis and psoriatic arthritis ten years ago. Psoriasis is a chronic autoimmune disease and presently there is no cure for it. When I first received my diagnosis, I felt devastated! Since then, I have tried various treatments for my disease. I am fortunate that my current treatment is helping me to live a better quality of life. My hope is that one day there will be a cure for the approximately 100 million individuals affected worldwide!
Through her advocacy work and partnering with different companies, Olive has gained expertise in public speaking, speaking about living with her condition and getting the emotion of the condition across to the audience. She also teaches researchers and partners about how to work with patients and involve them throughout the production/ research process. Olive has been a co-author on several articles and was also a co- author for the patient and public involvement module for the Clinical Trials Masters program at Edinburgh University. A lot of her time is spent converting academic writing into plain english to make it understandable for the reader but ensuring the correct information is still in the text.
Lyfebulb, a patient-empowerment platform that connects chronic disease patients, industry, and investors to empower patients and support user-driven innovation, and The New York Stem Cell Foundation (NYSCF), a nonprofit dedicated to advancing stem cell research for the major diseases of our time, today announced a collaboration that will address current challenges facing the chronic disease community. The collaboration will kick off with an event focused on type 1 diabetes held at the NYSCF Research Institute in April of 2019— the first of many educational and advocacy events the organizations plan to hold.
The spring event will convene patients, advocates, scientists, and caregivers to discuss the future of chronic disease research and treatment. This program will aim to identify research needs via NYSCF’s community of researchers and stem cell thought leaders and well as Lyfebulb’s curated patient network, led by its Patient Ambassadors and Patients Entrepreneurs. Lyfebulb Patient Ambassadors are passionate individuals using their voice to advocate, share stories, create change, and inspire others living with chronic disease. Lyfebulb Patient Entrepreneurs are those who have been personally affected by a disease, whether as a patient or through a loved one, and who have created a product or service to address an issue encountered by patients.
“As a company focused on reducing the burden of living with a chronic disease, Lyfebulb’s mission aligns closely with that of NYSCF, which works in advancing knowledge and therapies using stem cell research,” said Dr. Karin (Hehenberger) Denoyer, Founder and CEO of Lyfebulb. “These events will bring together the NYSCF community, patients, chronic disease advocates, prominent thought leaders and researchers, and those who have a strong interest in advancing treatment. This group will be critical in providing real-world experience to inspire and motivate the scientists and teams conducting research for a cure.”
The NYSCF Research Institute conducts exceptional scientific research that, when translated into patient-centric terms, will be educational and inspirational to Lyfebulb’s network of persons affected by chronic disease. NYSCF scientists are investigating the causes of type 1 diabetes using state-of-the-art stem cell technology and, at the April event, will share their recent advancements in understanding the mechanisms behind the disease. They will also discuss how these findings will one day translate into personalized, effective therapies.
“NYSCF and LyfeBulb share a deep commitment to improving the lives of patients,” said Susan L. Solomon, NYSCF CEO and Co-founder. “Together, we look forward to ensuring that those suffering from chronic disease feel supported and informed as we work to improve their treatment options.”
Additional event details will be announced via Lyfebulb and NYSCF.