Making the RARE voice heard
Jennie is a married mum of three and writer of @LittleLifeofMine. She also happens to be part of the RARE community and lives with several chronic conditions, including EDS Hypermobility type, Postural Orthostatic Tachycardia Syndrome, Gastroparesis and Inflammatory Bowel Disease. We featured her voice in our Autumn Issue, Patient Voice, (refer My Time page 48), and we are thrilled that she has agreed to join us as a guest columnist for Rare Revolution Magazine, where she will become a regular voice, bringing her own brand of passion, humour, sarcasm and emotion.
“I seem to get a new diagnosis almost every few months! I do my best to enjoy life and stay upbeat, but it can be hard as I'm generally in pain and exhausted. When I was told I wouldn't work again that was a huge blow. Becoming disabled not only took away my health, I felt it muted my voice. I had no standing in the world. So I began my blog. I wanted to share my experiences and my thoughts and feelings on issues pertinent to the disabled community. Issues close to my heart. I'm really surprised and humbled by how far it's come, and how many people have told me they're helped and encouraged by my writing.
The only way I can write is from the heart, so that's what I will be doing in my new column within Rare Revolution. I'm really looking forward to sharing my work, and hope you all enjoy reading it.” Jennie Patterson
On the eve of our big launch, we are in a reflective mood; looking back over the last few months to get us to this point, is emotional.
The stories that have been shared with us in writing and over the phone have been truly moving, as are the feats achieved by the RARE community whether they be directly or indirectly affected by a rare disease.
One thing is clear, there is a strong desire to be heard and represented!
Our vision is simple, and its one of a #RareRevolution - "To bring about a dramatic and wide reaching change in conditions and attitudes"
When Michael McGrath, (named as one of Britain's most influential disabled people, Power 100, 2016), says this about the launch edition you can't help but feel proud!
“In helping to raise real and hopefully lasting awareness of RARE diseases, this special launch edition of Rare Revolution Magazine is not only packed with information but its story-telling style is engaging, informative and inspirational. To be featured is an honour. Providing a platform that not only gives hope but also stimulates interest and broadens knowledge is refreshing. I am proud to be part of this growing community of RARE advocates that not only care but also want to champion change – bring on the #RareRevolution!”
To read about Michael in our RARE Inspiration interview, make sure you receive your free digital copy tomorrow.
Subscribe at: www.rarerevolutionmagazine.com
Come with us, and join our #RareRevolution and let's just see what can be created together.
Nicola Miller & Rebecca Stewart
for RARE Revolution Magazine