- A HUGE THANK YOU TO ZURICH and their incredibly generous dress down day donation! £1410!!!
- These funds will go directly towards our counselling initiative. Thank you, thank you!!!
- Without Wing’s first anniversary celebration in conjunction with Manx Litfest
- Dance of the Devil’s Snuffbox: October 21st Laxey Working Mens Institute 8pm. GET YOUR TICKETS NOW BEFORE IT”S TOO LATE! Priced £10 these are available from the link on our homepage or email email@example.com. There are also a handful behind the counter in Noa’s Bakehouse. Please come and be entertained, as well as in support of two hardworking charities. Set to be great fun and featuring a ton of prize winning local talent and other, quirky wordsmiths
- October 12th : Arthritis Awareness Day – TODAY!
- Read a little below about our up and coming autoimmune arthritis awareness plans below. Featuring quotes from sufferers of autoimmune arthritis. If you would like to get involved in our Winter awareness campaign, please get in contact and we can add you to our Facebook Focus Group!
First up, thank you Zurich! What a fantastic donation! These funds will go directly towards our counselling initiative which we hope to develop even further next year. Watch this space! Currently we have a fully funded counselling scheme for anyone struggling with autoimmune arthritis. Please do not suffer in silence. Contact us today! We also provide financial help towards any complementary health or physical rehab programme with an accredited practitioner. Looking after your mental and emotional health is not a secondary consideration with these illnesses. It directly impacts your physical health and there is a whole wealth of studies out there regarding the importance of support and keeping positive when it comes to keeping these illnesses licked!
NEXT UP! HAPPY ONE YEAR ANNIVERSARY TO US! Without Wings received our charity number October 6th 2016 and our bank account in the December. It’s been an incredibly full on year. We’ve set up this website, run awareness campaigns, given individuals a chance to share their experiences for the benefit of others, had speakers over regarding natural healing, set up a counselling scheme, developed partnerships with like minded charities, and other organisations, such as the NSC, who can offer physical help. We’ve also highlighted the much overlooked issue of mental health and chronic illness – a ‘service gap’ currently within our NHS, and raised enough money so far to fund our ventures.
It’s been busy and quite exhausting, but given the fantastic feedback we’ve had and the tremendous amount of support, we believe it’s been worth it. Next year will see a complementary health fair, JIA awareness day and yet more exciting speakers! We really hope that through all our efforts we are finally opening the door to people living with these illnesses. In doing so, we hope they can get the support they need, in recognition of what it really is like to live with autoimmune arthritis.
A huge huge THANK YOU to everyone who has helped us raise money these last 12 months. We are determined to ensure that every penny is spent wisely within our remit of awareness, information and compassionate funding.
Our first anniversary ‘party’ evening: DANCE OF THE DEVIL’S SNUFFBOX will take place October 21st, Laxey Working Mens Institute, 8pm. Get your tickets now from our homepage, Noa’s Bakehouse, or by emailing us, firstname.lastname@example.org Tickets are limited! We’re running the event in conjunction with Manx Litfest, a super charity who, since 2011, have done so much to encourage literary ventures on the Island. Featuring many prize winning local writers and a few quirky wordsmiths we’ve picked up along the way, this is a celebration of how stories can transport anyone to anywhere at anytime, regardless of health or mobility. We do hope you can come and join us.
October 12th is World Arthritis Awareness Day! So what is arthritis? Or rather, what does arthritis mean to people who have to live with it everyday?
There are actually hundreds of different types of arthritis. Osteoarthritis – which affects approximately one third (8.75 million) of people in the UK over the age of 45 and is non-autoimmune, is the most common. It’s also the type of arthritis that everyone thinks of when the word ‘arthritis’ is mentioned – a disease commonly associated with ageing (though it can strike younger people too) and related to wear and tear (though again, not always).
Autoimmune arthritis however, is completely different and is a blanket description for related diseases whereby the immune system attacks the joints. These illnesses are therefore a manifestation of the same problem that causes such diseases as type 1 diabetes, MS and Crohn’s for example. In fact, people with autoimmune arthritis will often have other autoimmune illnesses.
Here are a few facts and figures:
Rheumatoid Arthritis affects around 400,000 people in the UK, Ankylosing Spondylitis about 120,000, Psoriatic Arthritis somewhere between 50,000 and 150,000 (more on this), Lupus around 50,000 and JIA 12,000 children. Autoimmune arthritis can also be a secondary symptom of other autoimmune diseases, especially those of the gut. All these illnesses most commonly first strike people of working or child bearing age (JIA is a term for arthritis presentation in under 16s), can be volatile and difficult to manage, are systemic (in that they can also affect the skin, hair, nails, eyes and internal organs – as well as up to every joint in the body), are cited as ‘progressive and incurable’ and require ‘aggressive’ lifelong medication. Early medical intervention is essential with these illnesses which is why raising awareness is crucial! All too often (yes, even in the Isle of Man!) symptoms are not picked up early enough – especially when there is no rheumatoid factor present. Later diagnosis can mean longer recovery time and more aggressive medication. If left untreated, severe cases can and do lead to organ failure and death.
Many sufferers of these illnesses therefore dislike, or even discard the term ‘Arthritis’ – which means ‘joint pain,’ arguing that it simply does not convey what people living with these diseases often have to deal with on a day to day basis. In addition to this, due to the complex and overlapping nature of autoimmune problems, some people with autoimmune arthritis don’t even have a proper diagnosis (hence why figures on PsA are so vague). In these cases the term ‘arthritis’ to describe their illness can be particularly confusing and is desperately inadequate.
Over the Winter, Without Wings will be running an awareness campaign regarding autoimmune arthritis. This will be in the form of commissioned posters by a local artist, which we hope to display on a rotational basis around the Island. WE DO WANT TO GIVE THESE POSTERS A POSITIVE SLANT, as well as the facts – to show that life goes on despite these diseases, and how tough people can be. Putting a positive face on chronic illness is an important aspect of Without Wing’s ethos.
If you think you have something to say and would like to be involved, PLEASE GET IN CONTACT! We would love to add you to our Facebook focus group so we can get the ball rolling. This is YOUR charity. Let your voice be heard! In the meantime, we have compiled a few quotes from all the wonderful people who very very kindly submitted them, regarding what living with autoimmune arthritis is really like. They’re a little hard hitting, but it’s what people gave us so here goes. All names have been changed for anonymity. Have a great day, stay well and remember to get in contact if you think we can help!
“During my worst flare I was in AGONY. RA pain is like nothing on this earth. It paralyses the joints to such an extent that trying to move them is like trying to snap a normal joint backwards. It radiates everywhere too – every nerve , every muscle, every ligament. I felt like I was living in a body made entirely of smashed glass and every movement was excruciating.” Victoria. PsA
“Having someone with a firm handshake shake my hand or someone give me a strong hug, is enough to ruin my whole week. Not just from a physical point of view, but because not being able to cope with something so ‘normal,’ makes me feel like a failure.” Ted. RA.
“RA constantly disappoints. Just when you think you’re making progress, getting stable and healing, inflammation pushes back again. The path to wellness through the mountain is an extremely narrow one and it takes extraordinary diligence and persistence to get confidence and control over this terrible condition.” Clint Paddison – ex RA sufferer and devisor of the Paddison Program for Rheumatoid Arthritis – thanks Clint for submitting this for us especially <3
“I’ve lived with RA most of my life. It’s an invisible, destructive disease that secludes us and does way more damage to us than just our joints. Those with RA suffer in silence.” Kathy. JIA (now RA)
“Keep life simple, happy and as normal as possible.” Debbie, mother to child with JIA
“My hands and fingers experience stiffness and swelling all the time, sometimes my feet, knees and ankles too, and some days I’m so tired. But I keep functioning. I consider myself in the early stages of this illness. If I apply a strict diet and rigorous exercise, I can contain it, but deteriorate if I don’t, which is a problem because it’s hard being so disciplined.” Vicky. RA
“The medication made me so sick. My hair began to fall out too. Where do you go from there?” Di. PsA
“I was diagnosed at at 40. I lead half a life but with twice the strength.” Karen. RA
“RA is super super hard to heal and get better from. It deforms a hand, bends your elbows, stiffens up your hips and swells up a knee. The fatigue can be so bad you have to lie down and wait, sometimes hours. I am strong, I am healthy. I have RA.” Ella. Seronegative RA.
“Most people wouldn’t even consider moving with the pain levels I deal with on an everyday basis. I do though, because otherwise I would have no life at all. I have to prove to my pain that I’m stronger than it is.” Marjorie. RA
And a quote submitted to us, also from Marjorie, from an internet meme:
“Arthritis is not just a problem with my joints. It’s the sleepless nights, the loss of morale, the chronic fatigue, the depression, the struggle to walk and exercise, the ‘but you don’t look ill’, the ‘you’re too young for arthritis’, the missing out on parties, the staying sober, the knowledge that there is no cure, the injections and blood tests and scans and drugs, the missing out on things with your friends, the medication which makes you sick, the tears and stress, the anger you feel when you can’t do simple tasks and of course the indescribable pain. To everyone out there fighting arthritis, you are so much stronger than you know.”