Alexandra Muskat was first diagnosed with Type 2 Diabetes at 19 years old. As an attorney and social media manager, she spent the last few years learning more about Diabetes and endeavoring to educate the community at large by sharing her story on social media.
Work Activities: Medically retired due to Rheumatoid Arthritis 2008 Westfield Washington Schools 1997 to 2008 Director of Business and Finance* Marion Community Schools 1993 – 1997 Director of Finance City of Kokomo IN 1982 – 1993 City Controller Development Director Planner Responsibilities included: • Chief negotiator for complex labor negotiations, • Building construction oversight including over 600 million dollars of new construction • Public meeting presentations • Setting policy for the school system • Budget of 60 million dollars per year. Academic credentials BSPA Indiana University 1979 MSPA Indiana University 1989 Ed.D. Nova Southeastern University 2012 Diabetes activities • Contributor at TUDiabetes.org since 2013, including more than 200 blogs • T1 PWD since 1974. ( I was diagnosed at DisneyWorld 😊 ) • Author owner of www.RADiabetes.com • Member of FDA Patient Engagement Collaborative • Patient speaker at 2019 IDF summit in Korea about the history of diabetes technology Arthritis Activities • Local Arthritis Foundation board member • Member of Arthritis Foundation Patient Engagement Council One heck nice guy, most times
I’m Tina B and I was born with heart disease, pulmonary hypertension and other problems. The outlook for my future wasn’t a positive one. My parents were told that if I managed to live to be a teenager it would be a miracle. I am now well passed my teens and living an incredible life! As the longest living survivor in Africa to have had a heart and bilateral lung transplant, I have looked death in the eye and defeated it! With my proven strategies we can get you to your most incredible life too!
Who am I?
My name is Daniel or Dan and I have type 1 diabetes. I was diagnosed at the age of 10 on 17 August 1996. I live just outside London.
Where am I from?
My family are from the Caribbean however I was born in London and have lived in the UK all of my life.
What do I know about type 1 diabetes?
I’ve been living with type 1 diabetes for over twenty years and have first hand experience of the highs, lows and very lows the condition brings to a persons life.
What’s my diagnosis story?
Everyone who experiences a type 1 diabetes diagnosis has their own story. You could be the person with type 1, their parent, sibling or grandparent. You have your own individual story. Here’s mine.
It was the summer of 96 (enter a poor Summer of 69 joke here) and 10 year old me was enjoying the summer holidays. It was a ‘hot’ British Summer and the Ribena was flowing so I kept drinking and drinking and drinking. It was hot so nothing was thought of it by those around me. This all changed on 16 August. I was on a family trip to the cinema and we had to leave early due to me being unwell. I continued to be unwell for the rest of the day.
Fast forward to 1am on 17 August 1996 and I was still unwell. The emergency doctor was called. After he arrived, tested my blood sugar levels he said, you need to take him to Accident and Emergency. Now!
I didn’t know what was happening but when we reached the hospital, I soon realised. I remember needles and lots of poking, prodding and waiting around. It was early morning now and a doctor sat me down and said, ‘You have Diabetes’.
I don’t remember what was said after that but those words and the image of the doctor still stays with me until this day.
I stayed in hospital for a few days, the highlight being interviewed by a news channel about my diagnosis. Then I was off continuing my journey of living with type 1 diabetes and navigating this thing called life.
I’ve come a long way since then and overcome many challenges. I’m still on my journey and if I can get through it then I know you can.
Finally, as you have read I’ve had type 1 diabetes for a number of years but I am not the following:
– a ‘perfect’ type 1 diabetic (This does not exist!)
– an expert in managing the condition
– a healthcare professional.
Elizabeth was diagnosed with cystic fibrosis at 4 months old. The youngest of three, and the only child with CF, Elizabeth’s health began to decline during her sophomore year of college, causing her to withdraw from school and move home. Three years ago, Elizabeth moved to the Bay Area to focus on her health. Despite the progression of her disease, Elizabeth enjoys traveling, photography, reading, and buying too many sweaters for her little dog, Tucker. Double-lung transplant survivor with cystic fibrosis. Public speaker and advocate. Keeping it salty 24/7 while showing the good, the bad, and the ugly with sarcasm and humor.
I was diagnosed with Fibromyalgia fourteen years ago. I remember not knowing how to spell or even pronounce it, let alone knowing what it meant to have to live with it! Tears rolled down my face for two reasons – the relief that I finally discovered the cause of my excruciating pain and the realization that I was going to be in the same pain for the rest of my life.
Fast forward fourteen years, I’ve had my share of struggles, disappointments, and frustrations. It’s difficult having an invisible illness – being in a place where nobody can ever tell how it impacts you on a daily basis, yet it affects every single decision you make in your life. I’ve come to realize that I consider it to be a blessing, and a curse at the same time.
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.