Spotlight Story Program: Meet Meghan Smith

April is National Donate Life in America, and it’s a critical time to raise awareness on not only to become an organ donor, but also to learn the stories of those that have received this lifesaving transplants. One of those receipts is Maryland native Meghan Smith, a marketing executive that has used Instagram for our favorite thing…raising awareness, changing misconceptions, and showing how awesome and fun life can be with any health struggles. After a few years of health issues, it was discovered Meghan had liver disease and was in need of a transplant. Luckily, her uncle was a match to donate a portion of his liver! Meghan is such a transparent advocate because she shares the realness of post-transplant life, and all the medications and adjustments you make in life to adapt and excel. There’s no singular way to look or live as a young person with health struggle, and Meghan–who’s now a Donate Life Ambassador–is using her growing platform to give a fresh look on how incredible , fun and fulfilling life can be!

My name is Meghan and I am a 29 year old from Baltimore, MD. I work as a marketing executive for a global affiliate marketing company, and in my spare time enjoy traveling, reading, shopping, playing with my dog and spending time with friends and family. Growing up, I had a fairly normal and typical childhood. I lived in the suburbs outside of Baltimore with my mom, dad and younger brother, was active in dance and softball, and was generally healthy.

When I was 19 years old, I was studying at the University of Maryland when I started to develop abdominal pain and severe itchiness. I spent most of my college years going to different doctors trying to figure out the cause. Finally, at 22 I met a doctor at Johns Hopkins who determined the issue was caused by my liver. Around this time, my younger brother was 19 and started developing similar symptoms. For whatever reason, his liver disease had progressed much faster and he was in liver failure with liver cancer. He was listed for liver transplant and thanks to the generosity of one of my dad’s previous co-workers, received a living donor liver transplant at the age of 21.

I continued to be monitored by my hepatology team, and while numerous genetic tests were done to try to figure out the cause of our liver disease, there was never a match. In August of 2019 it was determined that it was time for me to be listed for liver transplant. Numerous people kindly reached out about being tested to be my donor. My uncle was the first person to undergo testing, and surprisingly he was a perfect match! It is very rare for the first person to be tested to be a match.

On December 10 2019, I received the amazing gift of a second chance at life thanks to my uncle donating a part of his liver to me.

Overall surgery and recovery went very well for the both of us. I spent two weeks in the hospital and was able to go home on December 24th, just in time for Christmas.

Unfortunately, two days later I developed an infection and had to be re-admitted to the hospital. Because my brother had gone through transplant before me, I was aware that transplant recovery is a process full of ups and downs along the way.

Once I was released from the hospital, I continued to recover and adjust to my new post-transplant life. This included taking a large number of medications multiple times a day to avoid rejection and infections, monitoring my vitals every day, and getting blood work multiple times a week.

I gradually built up to walking more often and getting out of the house more frequently. I was able to return to work at the end of February 2020 on a part-time basis, working up to full-time over the following months. I am incredibly lucky to work for a company that has been so supportive throughout my entire transplant process, and makes the health of their employees a priority.

Post-transplant I became a Donate Life Ambassador to help educate others on organ donation and encourage them to register to be an organ donor.

I’ve found that there are still many myths and misconceptions around organ donation and it is not discussed nearly enough, especially within my age group.

Almost 114,000 people in the United States are currently on the waiting list for a life-saving organ transplant, and on average 20 people die a day every day from the lack of available organs for transplant. I’m one of the lucky ones who received a transplant, and am inspired to help make the waiting list smaller and smaller until it is eventually 0.  

I’ve been using Instagram as a platform to share my transplant story and educate others on what it is like being an immunocompromised person during the COVID-19 pandemic. I think it is helpful to see that while someone may look “young and healthy” this may not always be the case, and to put a face to the people whose lives can be saved from following social-distancing measures and flattening the curve of the spread of coronavirus.

Throughout my transplant and now the COVID-19 pandemic, I’m often asked how I remain so positive given the circumstances.

My answer is pretty simple – I do what I can to protect myself and keep myself safe, but don’t worry over the things that are out of my control. I would offer the same advice to anyone who is feeling anxious during this time of unprecedented illness and uncertainty; do the things that have been recommended – wash your hands, stay inside as much as possible, practice social-distancing – but don’t let the thought of contracting the coronavirus consume you.

Take comfort in knowing you are doing everything you can to protect yourself and others, and use this time to practice self-care, pick up a new hobby, or do something you enjoy.

 

Spotlight Story Program: Meet Caitlyn Fulton

Meet Caitlyn Fulton

Growing up in Scotland with cerebral palsy, Caitlyn Fulton has challenged herself to not only become her biggest cheerleader for her daily life, but to take her hobbies and bring them into the forefront of the work and activism she does. Having studied music in university and being a model, Caitlyn is constantly free in using media and art to break stigmas while also empowering other young people that they can find their inner strength in the things they love to do. While Caitlyn’s CP doesn’t define her, it gives her a lens to tackle life and achieve her goals, and we’re proud that she’s a GBL-All Star in Caitlyn’s second year working with InvisiYouth in our leadership program! Caitlyn gives so much good advice your young adults to finds ways to enjoy life even in those medical settings, and how to have your chronic illness/disability be not your sole identifier but one of the traits that make you unique!

Hi! My name is Caitlyn, I’m 20 from Scotland. I was born premature and as a result was diagnosed with Cerebral Palsy. CP is a neurological condition which is caused by damage to the brain. For me, CP effects my balance and coordination.

I’ve used my health journey in my work by exploring the things I love, like my passion for music. I studied it at Diploma level [in university], and alongside music as a whole, I’m a vocalist at heart and love to sing. I can just be me and not think of my condition; it’s a freeing feeling of enjoyment too.

Secondly, I’ve used my health journey to inspire others by becoming a model—signed with Zebedee Talent—breaking down the barriers and stigmas about disability that the fashion and media industry hold.

It allows me to challenge stigmas on disability and raising awareness of disabled people in wheelchairs specifically by being seen in a positive light and that’s what I’m aiming for! There’s still a long way to go for the industry to be completely inclusive but in the last couple of years there’s been a real positive change within – step/wheel in the right direction.

I also play Boccia (a Paralympic sport) with a recognised team in Glasgow as part of Scottish Disability Sport. By doing so, not only am I raising awareness of disability but also women in sport too as it’s a rather male-dominated field.

Writing/blogging is recent addition but I like writing about topics that are important to me, such as disability rights and my hobbies which hopefully resonates with other young people as it’s great for them to know others out there like myself feel the same way as them. Through my health journey, I’ve grown in knowing I shouldn’t feel bad for having Cerebral Palsy. It makes me who I am, though it doesn’t define me. I wouldn’t be the person I am today if I was non-disabled and I don’t know if I would want to be a totally different person – I’m happy being in the skin I’m in because I’m unique.

I’ve found ways to support others by sharing similar experiences and being a source of encouragement that while yes, life throws a lot of challenges, I always tackle them head on and think there’s always a reason why. I’m a true believer in the phrase, “things happen for a reason’.”

It’s been great having support groups too, connecting with others who have the same conditions and interests as myself. Social media is certainly a great tool to connect and interact. Especially with the likes of InvisiYouth, it’s been brilliant being part of such a great organisation and connecting with other young people worldwide.

When I look at my experiences in medical settings, there’s things I’ve learned that I’d love to share with others to improve their experiences. Even if it’s your first appointment in a new hospital where you’ve been referred for treatment, changing consultants or moving up from child to adult services -I know how daunting all of this can be as I’ve experienced it first hand – become familiar with your surroundings, get to know the nurses/staff who’ll be caring for you if its procedure-related.

Also bring home comforts, items that make you feel calm.

Whenever I went in for operations knowing it would be a good few weeks before going home, it helped knowing who the team members were that would have me in their care and over time there’s a bond that’s created. It’s bittersweet going home, I always felt sad saying goodbye when it was time to go yet it was a great feeling to know I was on the right track and made great progress.

In your daily life, know that your condition doesn’t defy you. Yes, it’s part of you but your worth so much more with the interests you have, outlays that shaped you, make you who you are. Dealing with my health has shaped me in knowing that I’ll experience many hurdles in life but I’ll always get through them no matter what. As I’ve gotten older I don’t feel embarrassed about having a disability and now I embrace it—it’s my superpower and I have a story to tell.

My main message: There will be good and bad days but know that your condition makes you who you are. Strive to be the best version of yourself, make the most of it.

I always say to myself ‘I was given this life because I was strong enough to live it’: strong enough to the face the battles that come my way and cherish the moments in live that are to be remembered. Look your bad days in the eye and know you’ll overcome them, maybe not tomorrow or the next day but you will achieve. Whenever you feel good in yourself, you can get through it all and survived another day, that’s what I tell myself and you should too – be proud!

Spotlight Story Program: Meet Rachel Hoy

Meet Rachel Hoy

Starting off 2021 with an upgrade to our Spotlight Story Program because it will now be MONTHLY human stories told BY young people FOR young people in the chronic illness/disability/mental health community! 

There is no better person to start the Spotlight Story Program for the new year than lyme disease activist and owner of the popular brand Tee Spoonies, Rachel Hoy. Being part of our Global Brand Leaders Program for two years, now as a #GBLAllStar, Australian Rachel has been such a firm believer for empowering young people with chronic illnesses to advocate for themselves. This coming from her experience living with Lyme disease and co-infections, along with POTS, MCAS, interstitial cystitis and autoimmune conditions. She understands that balancing life, work and chronic illness takes time–especially living with Lyme disease in Australia as comprehension and treatment access is harder to come by–and learning how you empower yourself to enjoy and succeed in life with any health struggles was something Rachel was super passionate for, and it resulted in her creating her own brand Tee Spoonies. Selling ethically made products like pocket tees, scrunchies, cards and more, Rachel has built a community behind Tee Spoonies that mirrors her style of activism perfectly!

My name is Rach – I’m a 28 year old Australian living with Lyme disease & co infections as well as POTS, MCAS, interstitial cystitis and autoimmune conditions.

I was infected with Lyme & co infections on a trip to the USA after finishing my Master’s degree six years ago.

The first two years after getting sick I spent most of my time searching for a diagnosis, only to find out when it did come, that the hardest part was ahead of me.

At 22 years, I had travelled the world, completed two degrees and worked as youth state manager and campaign designer for World Vision Australia, so having to step back to focus on my health was a steep learning curve.

Living with chronic Lyme disease in Australia is especially hard – it is recognised and understood even less here than overseas, which means limited access to doctors and treatments.

After six years of living with Lyme & co my illness has really progressed.

My main symptoms are severe joint pain, fatigue leaving me mainly housebound, headaches/migraines, gut, bladder and mast cell problems, and neurological issues including up to twenty seizures per day.

I learnt rather quickly how tough it could be living with chronic illness as a young person, including doctors who denied the severity of my illness and friends who left my side in the hard times.

I also realised the apparent need for us to be continually advocating for ourselves as chronically ill youth.

One day I had a light bulb moment and realised I could combine a number of my passions together: advocacy, ethical consumerism and design, in order to raise awareness about living with invisible illness.

My first design idea with Tee Spoonies was the invisible illness pocket tee, which has grown to be the most popular!

Having the tee resonate with so many invisible illness warriors has meant a lot.

I sew all of the pockets myself which adds a personal touch.

The chronic illness community is important to so many, and being a part of it in this way, and being able to create products that empower fellow spoonies has been a blessing.

Working with InvisiYouth the past two years has been a great experience. I’m proud to donate 100% of profits from our fundraiser upcycled scrunchie packs & 50% of profits from our recycled paper gift card packs to InvisiYouth.

Our brand is all about making unique, sustainable, ethically made products that are a labour of love.

We also donate 10% of all profits to the Lyme Disease Association of Australia. You can check out more on our website here: teespoonies.com

If I could give some pieces of advice to young people struggling with the throws of chronic & invisible illnesses it would be to remember your inherent value in this world over anything you could possibly accomplish.

Goals are great but values are key.

Often living with chronic illness can mean pushing back or rearranging timelines or goals, which can be disheartening, but who you are in life is a lot more important than where you are in life.

And if you’re reading this now I already know who you are is amazing, because the perseverance, resilience and strength living with serious illness requires does not come easily.

Secondly, you are not alone.

No matter how lonely, devastated or isolated you feel – there is a community out there who understand what you’re going through, and want to support, empower and help you in any way they can.

And lastly, YOU know YOU better than anyone!

Trust in yourself and advocate for your needs… with a little help from your friends 🙂

*to learn more about Rachel’s involvement in our GBL Program, click here. And to learn more about Rachel’s products with Tee Spoonies, click here.*