Spotlight Story Program: Shona Cobb’s Story

Meet Shona Cobb

Breaking the stigma-ceiling for chronic illness and disability comes to second nature to British 20 year old, Shona Cobb. She’s used her experience of life with Marfan Syndrome to empower others living with disabilities and illnesses, and change the way businesses, media and society treat disability. Shona uses her successful blog and speaking on TV and radio around England to bring change to disability rights, and as an InvisiYouth Global Brand Leader, Shona’s advocacy can reach an international stage. 

‘Is there a cure?’ is a response I get time and time again when explaining my rare condition to everyone from friends to strangers in the street. Perhaps if I were diagnosed as a teenager, or even an adult, the realization that there is no cure for my condition would have been a difficult one but knowing all my life that I have a genetic condition has given me a long time to come to terms with my prognosis.

Marfan Syndrome is the name of my primary condition, the starting point for all my secondary conditions. It’s a genetic connective tissue disorder, with my Mum having passed it on to me, and it can be visible quite far back in our family tree, with 2 family members dying from associated complications during my lifetime. A daunting aspect of this multi-systemic condition.

Long limbs are one sign of the condition and my unusually long arms and legs were visible on ultrasound scans while my Mum was still pregnant with me. Officially I was diagnosed as a toddler, when I started to meet more of the criteria, but my Mum knew that I had inherited Marfan a while before that.

For most of my childhood I was a happy, energetic child. I had hypermobile joints that I would show off to my classmates and I got ‘growing pains’ a lot more than my peers. Unpleasant but not unmanageable. It was as a teenager that more serious problems started appearing. I found myself missing more and more classes to attend hospital appointments, and the reality of my condition started to sink in. It wasn’t just something I happened to have anymore, it was affecting my daily life.

I was diagnosed with Scoliosis, a curve in my spine, at 13 years old and by 15 I was unable to climb the stairs at school, finding myself doing worksheets in the library instead of joining my classmates on the top floor of the main building.

It was isolating and really affected me because I loved education and learning, I thrived at school and worked hard. So, when I was booked in to have surgery to correct the curve with titanium rods and screws I was over the moon at the prospect of some relief from the back pain. I blogged about my experience, with my Mum keeping a diary of my first week in hospital, which proved to be a good idea as I barely remember that week. I even documented my experience with a complication post-surgery and finding out that I would need a second surgery. That was the beginning of me using my experiences to educate and support others, and it was also the start of my body beginning to crumble.

By 18 I’d had one hip replaced and the other being on its way to needing the same, a difficult thing to get your head round when joint replacements are so often associated with elderly people. I really thought that after my spinal surgery, I would return to life as normal. Then after my hip replacement, I was sure that was it, I’d surely endured enough. It was downhill from there though and now, at 20 years old, I’m a powerchair user with a large cyst at the bottom of my spine being my current issue.

It’s incredible how humans adapt, after every surgery I believed it was over, I believed I could not cope with anymore but again and again I proved myself wrong. Resilient, that ‘s what people would call me. I believe though that we all deal with the hand life gives us in whatever way we can, everyone has struggles and mine happen to be health related. Others deal with grief, violence, homelessness, the list goes on. I was determined to take the hand I’d been dealt and make the best of it.

It would take me all day to list everything I’ve been involved with in the past 2 years. I’ve used my blog and social media to raise awareness of Marfan Syndrome and educate people on disability issues. I’ve talked about how environmental movements can affect and exclude disabled people on the news. I’ve been involved with a national newspaper’s project to document the daily access problems I come across as a powerchair user. For someone who was painfully shy as a child, I’ve certainly come out of my shell, and that is all down to me having a chronic illness and being disabled. I feel I’ve found my calling in life. I’m not currently able to work but I can use my free time and my voice to help raise awareness and make real change.

I’ve helped local shops install ramps to improve access for disabled people and I’ve worked with organisations to improve their inclusivity. Charity work is something I’ve passionate about though, being the Marfan ambassador for The Hypermobility Syndromes Association (HMSA) and being the youngest person in a British Heart Foundation (BHF) patient advisory group. I’ve taken what life has given and done my best with it.

People often speak about disability and chronic illness as though it’s the worst thing, but I feel empowered by disability. I am proud to be a young disabled woman, I am proud of the change I’ve made and am trying to make in this world. Being disabled and chronically ill is a huge part of my identity, why shouldn’t I be proud of that?

I hope to inspire other disabled and chronically ill people to be empowered by their conditions too, as many other disabled activists and campaigners have done for me. I scroll through my Instagram feed and I feel empowered to see so many disabled people not being ashamed of their disability and embracing their bodies.

I’ve still many rocky roads ahead of me, including major open-heart surgery and potentially more risky spinal surgery, but I still look forward, looking back at the past, at a life that could have been, has never done me any favours. I’m looking forward now, looking forward to the change I can make in the world, looking forward to being more confident and looking forward to a time where disabled and chronically ill people can feel empowered by their disability without others telling us we shouldn’t.

I’m excited to fulfill these goals and support others, especially in my new role as a Global Brand Leader for InvisiYouth!

 

All of Those Exhilarating Peaks and Mega Excitements of My England Travels for InvisiYouth Charity

August 31st 2017

I recently took a trip to England all in the name of expanding InvisiYouth’s new programs and meeting with some of the amazing InvisiYouth supporters we’ve come to love and support over the years and charities we’ve admired for a while.  We have heard from some many of you that you wanted to hear all about my trip, and how I was able to handle all of that travel.  Now…I cannot give too many specifics about our new programs because we’re in development (and really, what would the surprise be if we told you everything before our prelaunch)!  But I can certainly share all the behind the scenes of my England trip and travel.

There are two big reasons why I wanted to make sure InvisiYouth made its way across the pond to England as our first major international InvisiYouth trip. One was the fact that England has been the first and most overwhelmingly supportive community since the day we launched.  The first teens and older youth with chronic illness and disability to follow InvisiYouth were all British.  And the first charities to reach across and want to lend support to InvisiYouth’s mission were from the United Kingdom.

That support network has continued to grow during our two years. We’ve even had an InvisiEvent in London last autumn, proving that InvisiYouth reaching beyond geographic, we are designed for older youth and can reach them anywhere!

The second reason to go to England was due to our Charity Friend role in the first Superhero Series Triathlon.  This was England’s very first adaptive disability triathlon, where people of all ages, disabilities and illnesses could compete in swimming, running and cycling with as much support and adaptive equipment as needed.

With the backdrop of the 2012 Olympics venue of Dorney Lake, the event was going to be unlike anything experienced before.  And with InvisiYouth having a group of teams all competing on behalf of InvisiYouth to fundraise for us, we had to make sure that we were there supporting them on their amazing job well done.

I have to say, what made the experience of bringing InvisiYouth even further into the UK even more special was that I was able to bring my entire family over with me, and getting some awesome memories of family time included in the work trip.  When life gets so chaotic and crazy, which can easily happen owning a charity and almost 25 years old, it is special to make memories with your family.

These are the people that have been my support system throughout my entire life, and even more than most families because they have become my rock throughout my health struggles.  Going through a chronic illness, growing up and finding myself as an adult with health struggles, is more complicated and challenging than any amount of words can describe.  But it has been my family that has help pull me through all the complexly stressful hardships that having RSD and EDS can really bring into your life.  I am thankful for them beyond belief, for their love and devotion, and their support of InvisiYouth Charity and our mission!

The England experience was an amazing opportunity to meet with individuals and charities who are going to be part of this new, evolving chapter of InvisiYouth Charity as it expands its advocacy education with our new tools and programs.  These illness lifestyle management tools are going to be the backbone of InvisiYouth where our events and speaking engagements will feed off as we continue to grow in the years to come.

I have always said that InvisiYouth’s focus is the age demographic in the illness/disability community, not the specific illness or disability, and we focus on the nonmedical side of the medical experience.  There are so many facets of life outside of illness when you live with one, so InvisiYouth cannot be more excited to provide support to help these young people live life and navigate life with illness so it can be fun, empowered and fulfilled in all its unique, adapted ways.

It is important for InvisiYouth to have more than just supporters in the UK, we need to have partners and lead volunteers in these other regions in order to engrain and expand the InvisiYouth tools and mission.  So it is completely obvious that these British older youth and charities will become part of our expansion and part of the InvisiYouth family. I am literally ripping at the seams wanting to share with you how fantastic each of these meetings were, how amazing these people are, and how completely overwhelmed with joy the InvisiYouth team is to know these organizations are going to be part of something we’re creating.

It is a massive THANK YOU to the always dedicated nonprofits like Once Upon a Smile, English Federation of Disability Sports, The Mix UK and CP Teens UK.

It is a gigantic THANK YOU to the empowering and fearless leaders like Sarah Alexander, Chloe Tears, Catrin Pugh and Emma Franklin.

There were even so many other British older youth and charities that we didn’t get to meet in person but we are going to be connecting with through the powers of technology and Skype now that we are back in the states.

Now, coming off such a successful meaningful and fun trip, we gotta break down the peaks and pitfalls of travel with a chronic illness like RSD.  I always joke that the pain and symptom peaks feel worth it when the experience is so worthwhile, and going over to England and creating these connections to expand InvisiYouth’s work even deeper into this nation was worthwhile.

Sitting on planes for almost nine hours straight doesn’t work well with RSD, so you must accommodate to your medical needs.  Getting medical documentation from doctors about being about to move around plane, to have people required to sit near you to help if side effects arise, all important to have.  And if you’re like me, and you are partially bionic like I am with rods and screws in my spine, then it’s always a good idea to have a medical letter notifying your metal (titanium or not) because it’s best to be safe when you’re going through airport security.

Make sure you have your own checklist for your medical needs (like medications, adaptive equipment, and what I call ‘checkup tools’).  I always like to make sure that my staple backups of support like Tylenol, KT Tape, bandage wraps, mini heat packs, resistance bands, and much more.  And you gotta make sure your wardrobe can match too.  Bringing additional layers when I deal with my limbs going too cold, shoes that can adapt to swelling easily, and dresses with slits so I could easily bring respite to my knee.  All these fashion tips made my travel easier.

But a major savior for me was timing.  I had to make sure my schedule was planned with work, with touristy stuff, as well as my medical rest time.  I had to make sure that when I was travelling, whether on a train, a cab, an Uber ride, or even a plane, that I was using my off-time wisely to recuperate from my symptoms to make it through each day.  And when I had resting time at the end of the day, it was all about heating, massages and elevation.  When you put time into your travels to focus on your health, it actually becomes a true travelling vacation and fun experience.

Yeah, when I got back to the states I had to put in some additional PT sessions, resting time and acupuncture, but with some focus on how to combat travel with a chronic illness, you can get through anything and ease what can be a setback on the return home.

Truth be told, I think England is now going to be a staple trip for Team InvisiYouth each and every year!  And while we’ll be having a team of supporters in the country year-round hosting and supporting all things InvisiYouth, I’ll be making sure that the UK is a top priority visit for us as we grow.  Not only did I love the people, culture, architecture, and cities, but I loved how warmly InvisiYouth’s mission and belief system was received and that deserves lots and lots of more England trips to come!

So…where will I be heading next for some InvisiYouth fun and work?  You’ll have to check out the InvisiYouth website for next month because we’re crossing country borders yet again!

~Dominique

What’s In My Bag: The “Boss Lady” Spoonie Edition

March 31, 2017

It’s often so hard to travel on a daily basis as a spoonie, let alone make sure that you have everything you need in order to adapt and function to your health struggles each and every day…Even harder, not to feel the need to carry a massive duffle bag everywhere you go!

For a long time, I’m always asked what are my essentials, my go-to tools and gadgets that I always carry with me, the “spoonie boss lady necessities” as one of our InvisiYouth supporters wrote to me.

So, it seemed about time that I finally reveal what I carry in my bag me, my own personal “What’s in my Bag” segment of this founder’s blog, but it’ll be the boss lady edition with a RSD-inflicted flare.

 

What’s typically in my bag is a range of products:

  1. Precut KT Tape
  2. Hand warmers
  3. Mini Tylenol bottle
  4. Bandage dispenser
  5. Notepad
  6. Pens with multiple sizes
  7. Calendar with to-do list
  8. Portable charger
  9. Business cards
  10. Tea
  11. Sunglasses
  12. Mini lavender lotion
  13. Phone
  14. Motivational quote

Besides the typical license and money additions that are always in any bag I take, I can break down the items I carry with me into three categories: my mini-medical toolkit, my boss girl life and my random necessities.

When it comes to my mini-medical toolkit, I bring the most compact versions of everything that I need with me. Since I have residual RSD, my needs are more for pain management and reduction of muscular swelling and spasms. I have to sort of premeditate what are the possible injuries and flare-ups that can happen during and typically for me, these are the main helpers to get me through the day to keep pushing forward.

I ALWAYS carry hand warmers on me!  They are a literal piece of heaven that can lower my pain super quickly. When it is cold out, or my limbs are freezing up, or my muscles lock up and I cannot move my hand or foot, I rip open the bag and let the warmth take over.  It has always given me a bit of solace to have the warmth.  Next, I bring precut strips of KT Tape.  This is amazing for the swelling and nerve pain that I have on a constant basis, especially when it spikes from overuse or injury.  I wear different patterns to reduce swelling and allow me to move my hand or foot more easily.  With it being precut, all I have to do is stick and apply!

The natural medical necessity is to make sure to carry a pain reliever like a mini Tylenol bottle, and while RSD nerve pain doesn’t improve with any ibuprofen, it helps with the natural side effects that come along with RSD for the rest of my body.  Muscle stiffness, soreness from overusing my right side to compensate, migraines that only affect my left side of my head…this mini Tylenol bottle is a must-have to get through the day.  Last, but definitely not least is the bandage dispenser (which is InvisiYouth merchandise with our logo!!).  While odd for RSD spoonies, you have to look at the side effects that happen with nerve damage.  When my hand spasms and I drop things, or my foot goes numb temporarily and I trip, minor injuries can happen and a Band-Aid is a definite necessity.

My next group of items that are always in my purse will help out my daily life as a boss…that is a charity founder boss. The most obvious thing I carry with me is my cell phone.  Whether it’s checking in on our social media accounts, responding to emails, or marking out reminders through our calendar…my phone has become more of an electronic personal assistant instead of the device I use to call or text.  But I cannot always rely on my phone to remember everything, and that is why I carry a mini calendar with a to-do list in my bag.  It is so important for me as a charity owner to remember all of my appointments, conference calls, Skype meetings and project deadlines so a calendar is vital to InvisiYouth consistent momentum forward.  And for each week, I keep a to-do list so I can cross off the different tasks at hand for the week; it keeps me on task, while also helping me remember what I need to do!

Next up is a notepad that is small and compact, with lots of blank pages. With the natural brain fog that unfortunately plagues my day as an RSD side-effect, I have a hard time remembering all the different ideas and moments of inspiration that come my way throughout the day.  Want to remember a new charity or company to contact for collaboration or fiscal sponsorship? Hear a teen that wants to work with us on advocacy?  Think of a new founder’s blog topic?  I keep a notepad to help me remember all the ideas that pop into my brain and prevent them from being forgotten.  But to write down in my calendar or notepad means I need to carry pens (hope you like our InvisiYouth merchandise specialized, and recycled material, pens!!) in my bag.  To help with my nerve damage, I always carry pens and pencils that are different sizes, some super thin, other jumbo-kindergartener sized.  This helps because oftentimes my grip changes each day with swelling and muscular pain/stiffness so it helps to always walk into meetings with multiple pens so no matter how I’m feeling, I can find one that will fit my grip in that moment.  And last, but definitely not least…you CANNOT be a boss lady without carrying a bunch of your own business cards!  It’s required, and needed, and honestly, there is a silent power that comes along with handing over that card for work!

The last bunch of items I keep in my purse all seem super random to most people, but somehow no matter how many times I clean out my bad, they end up in every bag. First off…obviously since I mentioned my overuse of my cell phone, it is only obvious that I would bring a portable charger with me as well.  I have to make sure that this phone is constantly charged and ready to use, and this portable charger is small and sleek to fit with in a clutch or massive duffle bag. Next, I always bring a mini lotion with me in my bag, but not just any lotion.  I always bring either a lavender lotion (my favorite is L’occitane Lavender hand cream) or I bring a eucalyptus-blended lotion (something like aromatherapy eucalyptus spearmint from Bath and Body Works). For me, the scent of lavender is a quick stress relief so if I’m every feeling stressed or anxious, I rub on some lavender lotion and the aromatic scent brings a quick level of ease.

Along that line of helping with stress, I usually carry a tea bag with me in all my bag.  In a lot of meetings that I go to, they usually ask if I want some coffee, tea or water to drink, and while I ADORE coffee, you want to stay nice and calm, not shaking from too much caffeine, especially if you have meetings all day long. There are dozens of flavors you can have (just like my chamomile flavor from Stash) and you can typically get hot water in most delicatessens or coffee houses so it’s a go-to in any scenario. Next, I will almost always carry a pair of sunglasses with me because with having residual RSD in the left side of my next and head, I can get spontaneous migraines that afflict only the left side of my head, and that can make me sensitive to the light. To prevent me having any problems going to work, or hanging out with friends, I have sunglasses to dim the brightness.  And if that means I need to be ‘that girl’ who wears her shades indoors…well I will be that person on occasion for the sake of my health.  Last, but certainly not least, I like to carry a motivational quote with me wherever I go.  Usually I have an inspiring quote engraved on a rock, like my favorite quote “This Too Shall Pass” that slips into any purse pocket.  It’s small, but just this little thing can give me that mental push to keep going when the work load piles up or my health starts to stumble.

What I carry is not just assisting me or improving my quality of life, but it’s simply empowering. By having all of this in my bag, I empower my life and the woman, the charity owner, the spoonie that I am because I take control of each choice in this very small part of my life.

It is my actions and my decisions on what to bring that motivate me because I hold all the power in what I bring which will help me during the day to make sure I can strong and achieve my daily goals.

 

~Dominique