I am living in a situation most people fear. Living with a debilitating disability from the age of 15 is not the ideal, in fact chronic illness seems to be people’s worst nightmare. Yet I am happy and content with my life; even proud of it. Nobody has any right to assume my life is anything less than that. Nobody has any right to pity me. I’ve been diagnosed with Friedreich’s Ataxia for seven years now, one of the first lessons this taught me was that the media and subsequently society treats disabled people as young and innocent, I read a lot of books and watched a lot of films and couldn’t find myself represented anywhere. I was constantly told by people that they were “so sorry”, which over time, knocked my confidence and I began to believe what I was hearing, that my life was sad and deserved to be pitied, I quickly began to assume the role of being helpless. It is much easier for us all to believe that sick people are naive and unaware of the severity of their situation, and therefore less affected and suffering less. Just imagine looking at someone with a debilitating chronic illness and seeing them as a complex, intelligent human being who understands the reality of their situation and more than that, wouldn’t change a thing. If you can’t do that, it says a lot more about you than it does about me. In these last seven years I have realised people have strange ways of addressing my disability, but the one that stands out the most is being patronised. For example, people speaking VERY slowly to me or simply ignoring me and just speaking to the person I’m with. I believe that this attitude is not a direct consequence of the lack of awareness for my condition, but more related to the way people choose (consciously or subconsciously) to frame disability in general. This framework was crucial to me understanding why people think it’s okay to pat me on the head and congratulate me for getting out of bed in the morning. I used to shy away from identifying as disabled, I didn’t want to associate with the stigma attached to it. This is not surprising, as it was drilled into me that this was a negative word. Recently, someone who knows me quite well made the comment that “if it wasn’t for your wheelchair you would look normal”, a similar backhanded compliment to “you’re too pretty to be in a wheelchair”, which I have also received. The truth is, disabled is not a slur, it is not offensive, and it has no bearing on how I look. It is just another word I can use to epitomise who I am, as simple as small or stubborn. It has taken me longer than I care to admit, to realising that instead of rejecting the word disabled because of its negative connotations, it is much more empowering to reject the negative connotations society places on disability. The western world is obsessed with change, making improvements, modifications and advancements. These are all buzz words we hear on the daily. Yet as a society, we dismiss disabled people. Innovation does not come from a perfect person living a perfect life with no challenges. Innovation is what happens when we listen to those who live differently to the norm, who deal with things the average person can’t even imagine. Which is why people with disabilities have much more to contribute than we get credit for. A few of my best friends have the same condition as me and they are some of the most resilient, intelligent, adaptable people I know, and the world would benefit from listening to them. After all, change is mandatory, but survival isn’t. Friedreich’s Ataxia is a multidisciplinary disease, meaning there aren’t many parts of me it doesn’t affect. Despite this, the worst ‘symptom’ of my condition is not my heart condition or scoliosis or fatigue or all the other grim affects you can find on google, but how other people treat me. It’s a strange concept that because of my physical condition I have to fight for people to treat me with the same respect they would any other stranger, but there is a fine line between changing how the majority think about those with disabilities and shrinking myself down so that people don’t feel awkward around me. The latter is something I refuse to do... It is not my responsibility to make others feel comfortable about my disability. Would you like to write a guest blog for our #RareYouthProject? Please contact Catherine at cdevaal@rarerevolutionmagazine.com For more information about Friedreich Ataxia visit https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Friedreichs-Ataxia-Fact-Sheet
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#RareYouthProject logo design competition is an exciting opportunity for our young rare community to show off their art and design skills to create a magnificent new logo for our #RareYouthProject and magazine. The competition closes on 26 April.  The brief
#RareYouthProject is all about empowering children and young people to have their RARE voices heard. We want the new logo to reflect the youth that it represents by being created by you, the voice of RARE youth. Guidance for the competition
How to enter Emailed submissions to: editor@rarerevolutionmagazine.com Postal entries: Rare Revolution Magazine, Office 54, Kent Space, Letraset Building, Wotton Road, Kingsnorth Industrial Estate, Ashford, Kent, TN23 6LN Deadline: All entries must be received by the 26 April 2019. Good luck!
Noonan Syndrome can make me sad sometimes because I am different to other people but I have got to meet lots of other people with Noonan Syndrome at our families days which makes me happy and thankful for being able to meet with good friends that are just like me.
My family which are my mummy, daddy and my two brothers Josh and Finlay are my sidekicks and they always push me to try anything at least once. I say that my Noonan syndrome is my super power like superman gets his power from the sun.  Last thing I would like to say is for the Doctors to keep asking questions and looking for answers so we can get the help we need so we can continue to thrive. Don't forget to be kind and keep smiling!!!!  The team behind ToyLikeMe campaign have been celebrating as Mattel the makers of Barbie, have announced the creation of a wheelchair using doll and prosthetic limb Barbie.
The #ToyLikeMe was established in April 2015 by journalist, Rebecca Atkinson, and parents of children with disabilities who were tired of not being able to find a positive #diff:ability representation in toys. The group started to makeover toys to give them #diff:abilities and invited followers to send in their creations. The results went viral and have been shared and viewed millions of times. Congratulations to all the team behind the ToyLikeMe campaign for raising awareness and campaigning to make toys inclusive. It is great to see global brands including Mattel and Playmobil producing toys that positively represent disability. Katrina Brooks aka Katty created her website Kattysterritory.com |
 | I was diagnosed with Lupus at nine years old, it was a roller coaster, coping with all the hospital appointments, taking lots of medication and the emotional ups and downs of not knowing the future. |
What is Lupus?
It's been ten years since my diagnosis with an illness called Juvenile Systemic Lupus Erythemastosus (Lupus). It is a condition that makes your immune system misbehave and can affect any part of your body and it can be life threatening. Lupus is considered as a more common rare disease, but it is quite rare for children to be diagnosed with it.
Like many less known conditions Lupus can be hard to treat, and because many of the symptoms cannot be physically seen, often young people like me with Lupus (and other invisible illnesses), feel like they are ignored and disbelieved due to the lack of physical signs of being unwell. It can be really hard coping with any long-term illness, but one of my aims is to raise awareness and share her experiences so I can help other people.
Living with Lupus as a child and young person
Last year I created a website called Kattysterritory.com, its about me, Lupus, my experiences and living life on my terms. When you have any long-term illness you need your family, doctors, school, and other agencies to work with you to make sure you remain well. But even more importantly is making sure that you have a voice, and any decisions involve you. Sometimes easier said than done!
Often as a young child growing up I found my voice wasn’t heard. Everyone focused on making me better, I know this was for my benefit but at times it didn’t feel like that. I began to feel more in control, as I became a teenager because questions were directed at me. I also felt more confident to say ‘no’ about things I wasn’t happy about with encouragement from the people closest to me.
To share my experiences further, I became involved in Great Ormond Street Hospitals young peoples forum (YPF), to help influence and shape the services they provide. I have also been actively involved in various Patient Participation and involvement projects, to represent a young patient perspective in developing and delivering NHS services. I’m also writing articles for Lupus UK the national organisation for patients and families affected by Lupus. This is tiring work as I also have chronic fatigue, but knowing I can make a difference makes me continue.
When you have a serious long-term condition you can be left feeling powerless when the world around you continues and you have to stop. I’ve just learned to find different ways to express myself and to cope.
It's been ten years since my diagnosis with an illness called Juvenile Systemic Lupus Erythemastosus (Lupus). It is a condition that makes your immune system misbehave and can affect any part of your body and it can be life threatening. Lupus is considered as a more common rare disease, but it is quite rare for children to be diagnosed with it.
Like many less known conditions Lupus can be hard to treat, and because many of the symptoms cannot be physically seen, often young people like me with Lupus (and other invisible illnesses), feel like they are ignored and disbelieved due to the lack of physical signs of being unwell. It can be really hard coping with any long-term illness, but one of my aims is to raise awareness and share her experiences so I can help other people.
Living with Lupus as a child and young person
Last year I created a website called Kattysterritory.com, its about me, Lupus, my experiences and living life on my terms. When you have any long-term illness you need your family, doctors, school, and other agencies to work with you to make sure you remain well. But even more importantly is making sure that you have a voice, and any decisions involve you. Sometimes easier said than done!
Often as a young child growing up I found my voice wasn’t heard. Everyone focused on making me better, I know this was for my benefit but at times it didn’t feel like that. I began to feel more in control, as I became a teenager because questions were directed at me. I also felt more confident to say ‘no’ about things I wasn’t happy about with encouragement from the people closest to me.
To share my experiences further, I became involved in Great Ormond Street Hospitals young peoples forum (YPF), to help influence and shape the services they provide. I have also been actively involved in various Patient Participation and involvement projects, to represent a young patient perspective in developing and delivering NHS services. I’m also writing articles for Lupus UK the national organisation for patients and families affected by Lupus. This is tiring work as I also have chronic fatigue, but knowing I can make a difference makes me continue.
When you have a serious long-term condition you can be left feeling powerless when the world around you continues and you have to stop. I’ve just learned to find different ways to express myself and to cope.
When you have a serious long-term condition you can be left feeling powerless when the world around you continues and you have to stop. I’ve just learned to find different ways to express myself and to cope. |  Katty |
For more information
Visit my website to find out more Kattysterritory.com
Katty was featured in issue 008 of Rare Revolution, read the article here
Visit my website to find out more Kattysterritory.com
Katty was featured in issue 008 of Rare Revolution, read the article here
| Katy is 21 years old, a student from Oxfordshire and has Scimitar Syndrome. Katy finds the lack of information and signposting one of the most difficult aspects of living with her condition and is reaching out to find others who share her RARE journey. |  |
Scimitar Syndrome, ever heard of it? I guess not as it only affects 1 in 100,000 people.
It is a congenital heart defect where the blood drains into the wrong part of the heart, which means that the right lung doesn’t get any blood supply going to it, preventing the right lung from functioning.
In short, scimitar syndrome is a heart condition where the right lung also doesn’t function and thereby someone who has scimitar syndrome has an overall reduced lung function and sometimes further cardiac complications.
This can mean regular hospital trips and tests and uncertainty. Unfortunately, there is usually no cure. It is said that if you are diagnosed after two years old, your life expectancy is better than those who are diagnosed before the age of two, but why I don’t know; I know so little about my condition!
Due to the lack of information on the condition it is hard to recognise which sources are reliable. After lots of research on supporting charities and organisations I could not find any.
It is a congenital heart defect where the blood drains into the wrong part of the heart, which means that the right lung doesn’t get any blood supply going to it, preventing the right lung from functioning.
In short, scimitar syndrome is a heart condition where the right lung also doesn’t function and thereby someone who has scimitar syndrome has an overall reduced lung function and sometimes further cardiac complications.
This can mean regular hospital trips and tests and uncertainty. Unfortunately, there is usually no cure. It is said that if you are diagnosed after two years old, your life expectancy is better than those who are diagnosed before the age of two, but why I don’t know; I know so little about my condition!
Due to the lack of information on the condition it is hard to recognise which sources are reliable. After lots of research on supporting charities and organisations I could not find any.
This leaves someone like me feeling alone, worried and isolated.
This leaves someone like me feeling alone, worried and isolated.I hope in the future more support can be found, and if anyone knows of support for this I would love to be connected!
If you have Scimitar Syndrome or know of any Scimitar Syndrome support networks and would like to be connected to Katy please contact our editor on editor@rarerevolutionmagazine.com
by Georgia Atkinson
The Rare Youth Project Launch! The event that outlived the double trouble stomping of the ‘Beast from the East’ and ‘storm Emma’ took place a month ago on Sunday 18th March 2018, but that didn't stop the #RareYouthProject team and Rare Revolution Magazine from steaming ahead and succeeding!!
It's our great honour and pleasure to re-introduce our wonderful hard-working #RareYouthProject award winners
Award for Perseverance and Commitment: Rowan Wallace(Presented by Rebecca Stewart) This award was presented to a person, who was wholly committed to their role and it was their determination in contacting high-level politicians, celebrities, and key industry companies that resulted in interviews with Scottish Party leaders (such as First Minister Nicola Sturgeon) and was responsible for bringing the project to the attention of SOBI who the became one of the sponsors for this project. |  |
 Award for Professional Excellence: Annabelle Hover(Presented by Sarah Gilbert) This award was presented to a #RareYouthProject team member in recognition of her outstanding professionalism. She had carried out fantastic research, she had made thorough preparations for each assignment and met every deadline that was asked of her. This person didn’t let their condition get in their way and has been a most inspiring example . Congratulations Annabelle!  | Award for Outstanding Knowledge in their field: Cameron Dixon.(Presented by Richard Lynn) This was an award to highlight this person’s exceptional knowledge of their subject. The knowledge and enthusiasm of politics and history is sensational, and they impressed everyone they met. It was an amazing honour to award this to Cameron. Congratulations!  Creating Communities award: Charlotte Thom(Presented by Tamara Howard) We were proud to present this award to Charlotte Thom in recognition of her contribution to our youth communication strategy. Her guidance and input in ensuring our messaging was right was fundamental to the success of social media communications this far. Her ability to work entirely independently has meant that she was a valuable member of our team and we are thrilled that we got to work with such an amazing, unforgettable woman who has inspired so many. |
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This blog is contributed to by the rare youth project community
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