More than three million Britons are living with Osteogenesis Imperfecta (otherwise known as Brittle Bone condition), according to leading clinician Dr Michael Mosley.
With a varying severity of symptoms for people with Brittle Bone condition - ranging from mild such as bones fracturing easily, to the most severe type being appearance and organ changes such as underdeveloped lungs - those with the condition can experience challenging physical and mental health stigmas.
Samantha Renke, 32 - who is an actress/presenter, disability campaigner and activist - also lives with Brittle Bone condition.
We are delighted to announce Sam has joined Ability Bow as a gym partner and forthcoming service user, to raise awareness about disabilities and long-term health conditions for not only those within the gym, but throughout the country.
We caught up with her to find out more about her life and background, her condition and how she's able to manage and enjoy her life to ensure she places the ability within disability.
Introducing Samantha Renke
Samantha Renke is living an incredibly active and varied life.
"I am very blessed and have had a rich and interesting 32 years on this earth - everything I am luckily involved with is special in its own way", Sam says.
"But my life motto is don't be scared to take chances and say yes to every opportunity even if it terrifies you", she adds.
Sam is the first to admit she has experienced self-doubt and fears. But for the German-born, Shoreditch-based fitness fan (who moved to and grew up in Lancashire as a child) and full-time wheelchair user, showing strength against adversity has been essential.
This inner-resilience has ensured she's been able to achieve, raise awareness and support others throughout her life, including as a former teacher and now as an award-winning actress and multi-charity campaigner; not to mention recent stints as a guest on ITV's Loose Women and as a debut ITV News reporter on disability cycling games - in association with east London-based and inclusive bicycle repairs and rider training charity, Bikeworks - within London's Queen Elizabeth Olympic Park last month.
"I never knew anyone 'like me' growing up, which made my younger years sometimes very lonely and challenging", Sam says.
"At the time, I felt if only I had someone with my disability guiding me and at times simply assuring me you will get through this or you can do it - so as I grew, I knew what I had to do and I could be that mentor I had longed for as a child/teenager.
"As I became an actress, it struck me in order for me to sustain my dream job, I would have to also change the minds and hearts of society and break down the attitudes towards disabled people and dispel those stereotypes.
"So when I found Ability Bow, I was able to remind myself you are not alone and the gym is already challenging stigmas - which is invaluable - as knowing and meeting other like-minded people can help in your darkest of times, as Ability Bow to me is already a great extended family", Sam adds.
As a new gym partner and service user, we decided to find out more from Sam about why she's joined our gym to not only use and benefit from our specialist team - including our highly qualified instructors - but why she wants to raise further awareness about accessibility within fitness facilities and what can be done to change the stigmas and stereotypes Sam believes need to change.
Hi Sam – welcome to Ability Bow. Tell us a bit more about yourself?
Hi Ability Bow! Thank you for welcoming me! I have a rare genetic disorder called Osteogenesis Imperfecta - or more commonly known, Brittle Bone condition. As I don't have Type 1 collagen in my body, this makes my bones very brittle.
Since moving to London in 2012, my life has really changed. This includes how I once viewed my lifestyle, including my diet, fitness and wellbeing.
As most of my friends are already gym regulars, I used to feel I was missing something fun and ultimately, something to increase my quality of life.
So my frantic search began and living within east London, I was really shocked by the lack of disability and long term health conditions-focused gym facilities I found online.
But then I eventually discovered Ability Bow and the rest is history.
Why did you decide to campaign for action and equality for disabled people?
My two passions in life are acting and performing, alongside my charity work.
After I became a Brittle Bone Society (the national charity supporting individuals and families affected by Osteogenesis Imperfecta) trustee, I knew I had the strength and ability to help others similar to me.
Being a former teacher, I knew the importance of sharing information. The more we share, the more we grow, develop and essentially become stronger.
And given according to Scope - who I also guest blog for, as part of their End the Awkward campaign, whereby I also discuss disability attitudes within End The Awkward videos - 13.9 million people identify as living with a disability/require additional needs within the UK, it's surprising people with disabilities only represent 3 per cent of our TV and magazine coverage.
This meant I wanted to campaign and become an activist - albeit, also needing to maintain a living and not just eat beans on toast forever - for the acting world and I'm really keen to encourage more budding disabled actors to follow in my tyre prints!
I'm also really keen to highlight to the media industry that inclusion is key and disabled people deserve to be represented in authentic way.
Why do you think inclusion for people with disabilities and long-term health conditions is vital and what more can be done?
I've always spoken honestly about my depression and anxiety. People with disabilities or long-term health conditions are more likely to face isolation, societal exclusion and loneliness.
Inclusion is vital because you can easily lose independence, your job, social network and self-worth and spiral into depression.
I'm keen to reiterate society should realise people with added needs are integral and equal and bring a lot to the UK - and we need to forge positive attitudes towards people with disabilities and chronic illness.
By ensuring people have nothing to fear or feel uncomfortable about, they will embrace rather than exclude and including people with disabilities rather than ignoring them is crucial. While people don't want to offend or 'put their foot in it', moving awkwardness aside, including the person in an activity and talking to them - as well as showing compassion and empathy - is a positive step.
I once heard someone quote, 'Inclusion isn't just inviting someone to your party, it's asking them to dance', which I believe is so true.
How does your condition influence others' perceptions of your disability/disability as a whole?
The word inspirational bugs me regarding my disability.
I’d rather you feel inspired by me because I am a business woman and philanthropist and not because of my everyday life including getting out of bed in the morning. My life is actually amazing because of my disability and not in spite of it!
Why are you passionate about people?
Don't tell anyone but I'm more of an animal lover than people. Joking aside, I realised growing up how fascinating people are - I chat a lot and people intrigue me. We are unique and learn from many people, cultures and creeds.
We are all in it together - like Ability Bow - and I'd rather focus on working with others rather than battling and hating.
What physical/psychological tips would you recommend to others with disabilities to maintain their health and wellbeing (albeit, everyone is unique)?
My condition often means I can't prepare meals for myself and in the past have habitually eaten ready meals or takeaways - eating healthily though is much better when you're less mobile, as salts and sugars aren't easily reversed.
Yoga and low impact sports can otherwise be a great way to increase your heart rate without exhausting or damaging your body - I'd recommend resistance bands too, which are cheap, easy and non-invasive.
Otherwise, try and get outdoors as often as you can to counter depression and anxiety, challenge yourself by learning new skills or enjoying a hobby and socialise and make new friends - like members at Ability Bow can do - as you're never too old!
Why do you find Ability Bow and our gym so special and unique - including its members, fellow campaigners, volunteers and staff?
What I love most about the Ability Bow team is your compassion and community sense.
It's rare in a place as overwhelming as London to feel part of such a great family like Ability Bow.
The gym itself is simply fantastic and often when you look at adaptions and facilities, they can often be very clinical, whereas Ability Bow is set in a lovely building and environment.
Why would you encourage people to join our Ability Bow gym?
Keeping fit is beneficial to both your physical and mental health and exercise can enhance so many health issues from calming menstrual cramps, to combatting muscle spasms or increasing muscle and bone density.
Ability Bow can easily help with all this to ensure you're looked after and supported properly.
Finally, what hobbies/interests do you have/what do you do in your spare time?
Apart from drinking wine occasionally, I'm a fashionista and spend lots on clothes.
Being a creative, I love how make-up/fashion can inspire you and demonstrate expression through colour. I like to experiment; although there have been various fashion faux pas in my day!
Thanks Samantha and we're delighted to have you on board!