On our ever evolving Information Page we have tried to include as many useful links as we can find. From benefit information to complementary practititioners, to natural healing specialists with well established track records, hospital info, support groups and more. We hope you find what you need here and please let us know if you would like to see anything else featured.
If you are seriously struggling with mobility, you are entitled to claim for Disability Living Allowance regardless of whether or not you are still able to work. This can also be claimed for children.
If you need any help understanding which forms to fill out, how to fill them out or how to get them processed efficiently, you can phone Markwell House 686496 and ask for Adult Social Work. They should be able to advise correctly and will even come to your home if necessary. It is up to you and your family to fill out the forms. If you are alone, apparently Crossroads Care can help. It’s really worth having a look through these sites if you are struggling as there is potentially a lot of help out there.
Facts About RA
Most people can live well with these conditions if they receive the correct support and medical intervention. Up until now medical support has been provided on the Island, but there has been a service gap in regards to psychological support. The National Institute for Health and Care Excellence (NICE), recognises that the pathway for people living with these conditions should also include psychological intervention and/ or coping strategies. Without Wings has been designed to fill this gap.
AUTOIMMUNE ARTHRITIS : THINGS TO KNOW
- The most common autoimmune arthritis illnesses include: rheumatoid and psoriatic arthritis (RA and PsA), ankylosing spondylitis (AS), lupus and juvenile idiopathic arthritis (JIA). However, there are actually dozens of types of autoimmune arthritis. Some of these are less intrusive, others are secondary issues to other autoimmune illness, and some are rare. Without Wing’s constitution covers all autoimmune arthritis.
- These illnesses are often ‘invisible.’ This means the person can look perfectly healthy even when struggling, a particular problem for people of working age.
- RA, PsA, AS, lupus and JIA are serious autoimmune illnesses. Cited as ‘progressive and incurable,’ they can affect the entire body. Autoimmune arthritis is therefore different to degenerative arthritis, when certain joints become worn over time. With autoimmune arthritis, multiple painful, stiff and swollen joints are generally the main symptom, with deterioration happening over time. However, the disease can also affect eyes, skin, soft tissues, blood vessels (vasculitis) and internal organs. Autoimmune disease means that the person’s immune system has started to attack their own, healthy tissue.
- Seropositive and seronegative: what are these terms and what is the difference? Seropositive inflammatory arthritis usually refers to diseases such as RA and lupus. These are generally easier to diagnose because of the rheumatoid factor present in the blood. Seronegative inflammatory arthritis often refers to conditions such as PsA, AS, and usually JIA. These are harder to diagnose from blood tests as there is no Rheumatoid Factor (RF) present. Because of this some people can suffer for years undiagnosed, leading to joint destruction. In all cases diagnosis is made by a rheumatologist. He/she will assess blood test results, especially C-reactive protein (CRP), and also be looking at physical presentation such as the presence of swelling and fluid around multiple joints, and lack of joint mobility.
- RA often mainly affects the peripheral joints, especially the small joints of the hands and feet. AS often mainly affects the spine. It is possible however to have spinal and peripheral joint disease. As in, the disease affects most joints in the body.
- These illnesses manifest differently in each person, and even in the same person over time. They can also overlap. It is common to have more than one autoimmune illness.
- These conditions can also change on a daily basis, especially with those living with moderate to severe illness. It is this that can make the conditions so difficult to live with – not just for the sufferer, but also their friends, families and employers. For some people, one day they can be severely affected and struggle with mobility, the next they can be much better. This unpredictability is not only frustrating, but in some instances can make it difficult to work.
- A ‘flare’ usually refers to any worsening of symptoms. These might include swelling in one or more joints, stiffness – often affecting the whole body, pain and also fatigue, or flu like symptoms. Ongoing flares usually require a change in medication.
- Medications include steroids, anti-inflammatories, DMARDs (methotrexate, sulfasalazine, plaquenil and leftonide) and anti TNF therapy – or biologics. It is unwise to consume alcohol when on these drugs. Regular blood tests are also required.
- Different people react differently to medications. Most experience few side effects and some experience many. Fatigue, nausea and ‘brain fog’ are often cited as common side effects. Most people respond well to treatment whilst others do not.
- Early and aggressive treatment has been shown to produce the best outcomes.
- Autoimmune Arthritis can affect anyone of any age and is more common in women than men. Thankfully, it is less common in the under 16s, affecting approximately 1 in a 1000. 80% of people with RA apparently develop the disease between the ages of 35 and 50. For adults, autoimmune arthritis affects approximately 1 to 1.5% of the population.
- Approximately 20% of people living with these illnesses will struggle with mental health issues related to their condition. With correct support and strategies, these can be be completely overcome or drastically minimised.
- There is hope. More and more people are learning to control their illnesses through strict dietary and exercise measures and there is a growing body of information coming through regarding this all the time. Taking good care of your physical, emotional and mental health, is also the safest way to avoid escalating illnesses/ complications. However, it must always be kept in mind that these conditions can be volatile, unpredictable and serious. Natural intervention must always be made in conjunction with your current treatment plan and with full support of your treatment professional.
HOW TO DONATE!!!
WE NEED DONATIONS! Please visit our Just Giving Page to DONATE or to organise your own fundraiser!
KEEP UP TO DATE
Keep up to date with everything we are doing and all our events and fundraisers by visiting and following our facebook page
How Can I Be More Involved
Lots of people are asking how they can be more involved. Here are a few ideas.
- Check out the calendar below, read our blog and support our awareness and fundraising campaigns. Attend our talks and other events, find us for a chat at events and keep an eye out for when we need help.
- If you have an ‘inspirational story’ regarding how you deal with autoimmune arthritis, please get in contact. We would love to feature you in our ‘Positive Living’ section.
- Ask your workplace/ school to do a dress down or similar fundraising effort on our behalf. Or ask us about charity boxes for your workplace.
- You can use our Just Giving page to get sponsored, then do something exciting and personally challenging to help us raise awareness/funds. Contact the papers and tell them about it!
- Organise a group in your area and do something positive together! We can link your group or your own events in on our info page and mention you in our blog
- Use us! We know it can be hard to ask for help but if we can then we will. All financial aid will be confidential unless expressly agreed otherwise.
- Tell people about us! Spread the word and share our Facebook posts. Help us break down misperceptions and the trivialisation of these illnessses. Help people get diagnosed earlier and enable all sufferers of these diseases to feel less isolated and confused and more supported and in better in control of their lives.