Lupus Awareness
As May 10th is World Lupus Day we thought now would be a great opportunity to talk about Lupus and how it affects Ros, the wife of director Wayne.
Lupus was named by 13th Century Physician Rogerius Frugardi, which is the Latin for Wolf; the name was given as the physician felt that the Lupus indicative facial rash was similar to a wolf bite.
Lupus is a condition that affects the immune system, causing it to attack healthy tissue within the body, leading to complications affecting the: skin, joints, kidney, heart, and lungs. In some Lupus patients there is also neurological involvement, as the immune system attacks the nervous system and brain.
The main symptoms of Lupus are chronic fatigue, joint and muscle pain, inflammation, fever, and skin rashes. When the inflammation affects the nervous system and the brain, there can be memory loss, confusion, headaches and strokes.
There is currently no cure for Lupus but the symptoms can be treated with medication and if it is controlled well then organ involvement can be kept to a minimum, leading to a 80-90% chance of a normal lifespan.
Here are some statistics on the condition that you may not have been aware of:
9 out of 10 people who are diagnosed with Lupus are women, and from these a high percentage are diagnosed between the age of 19 and 44
5 million people worldwide are diagnosed with Lupus
1 in 3 Lupus patients will also have another autoimmune condition
20% of those with Lupus will have a parent or sibling with Lupus and 5% will have children that also suffer with the condition.
On average it takes 7 years for a patient to be diagnosed. Part of the reason behind this is that Lupus is called the mimicking disease, as its symptoms could also be due to many other conditions and consequently diagnosis is usually made via blood tests which indicate a positive autoimmune response
63% of Lupus patients were initially wrongly diagnosed with another condition
65% of patients in the US state that chronic pain is the most difficult part of their condition.
70% of patients will have sun sensitivity, this means that time spent in the sun can lead to a higher risk of burning but also it can set off a Lupus flare, which leads to the immune system attacking healthy tissue. For those with sun sensitivity they can also have problems using computer screens and being in rooms with bright lights such as shops and offices.
As Lupus is a hidden illness it can be difficult for family and friends to understand how it is affecting you on a daily basis, so many Lupus patients use the spoon theory to try and help others to understand. At the start of the day you have ten spoons, each activity ‘costs’ a spoon/some spoons. For example, for some sufferers getting dressed will take a spoon, having a shower may take two, getting breakfast another spoon, coffee with a friend could maybe cost another three spoons. It can be difficult to understand how someone can be exhausted when they do not seem to have done much but depending on the current level of disease some days getting out of bed may take five spoons, on these days the offer of a takeaway seems like the best thing in the world.
Lupus patients will talk about ‘flares’ in the disease, this is because by its nature there will be times when the patient feels ‘normal’, where they can do everyday activities without much trouble or pain. However, when the disease is active and the patient is in a flare, these same activities will feel impossible, the pain may have started before even leaving bed, extreme fatigue means that walking down the stairs is exhausting and even having a conversation is tiring. Sitting still hurts, moving too much hurts, your body is basically attacking itself. All sorts of things can set off a flare including simple illness such as a cold, a cut that will get infected for no reason, stress, sunlight, lack of sleep, some foods, the list really does go on. Personally, I find that stress is a big flare risk, I am a natural worrier and stress about nearly everything and walking helps me to be mindful and keep calm but of course if the flare has started, I may not be able to walk or if I do it will leave me exhausted and this can cause more problems.
I was diagnosed with an autoimmune disease just before the first lockdown, at the time my symptoms included fatigue, daily headaches, chronic visual migraines, joint and muscle pain, mouth ulcers, and Raynaud’s. Most of these symptoms have been with me since I was a teenager and I believe that I have had autoimmune problems for my whole life. In the last twelve months I have been on treatment which has definitely helped with my symptoms and, although they are still present on a daily basis, when I do flare up I am not hit as hard as I was previously. The symptom I have found hardest to deal with is chronic fatigue, as it is difficult as a person who wants to be active to find that I am sometimes incapable of even walking down the street without spending the rest of the day doing nothing.
When I do too much my body reacts with headaches, pain in my joints, sensitivity in my muscles, stomach problems, and, the bane of my husband’s life, brain fog. Now that I know why I sometimes have these problems, I can moderate my behavior to try and stop flares from happening. If I know I will be doing lots, or more than usual, I make sure I have rest days to prepare and to recover. I now wear factor 50 sun cream every day, I stay well hydrated, and make sure I get as much sleep as possible. I avoid alcohol and try not to eat foods which are known to cause an immune response, I have mouthwash for my ulcers and painkillers or anti-inflammatories for the pain and as a lot of people with Lupus also suffer with vitamin deficiencies, I also take vitamins.
Thanks to advances in treatment, the mortality rate for Lupus has improved: pre 1955 the 5 year survival rate was less than 50%, now the survival rate at 10 years is 90% and where previously the disease itself was the main killer, due to current treatment options mortality tends to be due to complications and infections arising from the strong immunosuppressants sometimes needed, or cardiovascular events. This is despite there only being one new treatment approved by the FDA in the last 60 years.
In April 2022 scientists discovered a ‘Lupus Gene’. TLR7, which would normally fight off viruses, was found to be too activated in Lupus patients, causing it to attack healthy tissue. It is hoped that this discovery will lead to better treatments that can target this faulty gene that is thought to cause Lupus and other autoimmune conditions such as Rheumatoid Arthritis.
https://www.lupusuk.org.uk/world-lupus-day-2022-press-release
