UnTouchableConditions
A diagnosis can feel like it has only ever happened to you. It has not. Here is what each condition is, in plain English, and the people who have talked about living with it.
Immune system
The lymph nodes, spleen and bone marrow, which fight infection.
HIV
HIV is a virus that weakens the immune system. There is no cure, but with treatment most people live long, healthy lives. AIDS — now usually called late-stage or advanced HIV — is a group of serious illnesses caused by the virus, and most people on treatment in the UK never develop it. Two things are worth saying plainly, because stigma has outlived the facts. HIV treatment works: it aims to make the amount of virus in the blood undetectable, usually within six months, and **someone on effective treatment with an undetectable viral load cannot pass HIV on to anyone else**. And you cannot catch HIV from kissing, hugging, shaking hands, or from sharing a toilet seat, food, drink or ordinary household things. It is passed on through unprotected sex, by sharing needles or sex toys, and from mother to baby in pregnancy or birth. Some people get a flu-like illness two to six weeks after infection — sore throat, fever, swollen glands, aching muscles, a rash — and many have no symptoms for years, which is why testing matters. A test uses saliva or blood, and results come back within days at a clinic, or minutes with a home kit.
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Hodgkin lymphoma
Hodgkin lymphoma is an uncommon cancer of the lymphocytes — the white blood cells that help you fight infection. The most common first sign is a painless lump or swelling, usually in the neck, armpit or groin. Other symptoms can include itchy skin, night sweats, a high temperature, shortness of breath, sudden weight loss, and pain in the glands after drinking alcohol. These are far more often caused by something else, but see a GP if you have them: the earlier Hodgkin lymphoma is found, the better treatment tends to work.
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Lupus
Lupus, or systemic lupus erythematosus, is a long-term condition in which the immune system attacks the body's own tissues. The main symptoms are joint and muscle pain, very heavy tiredness and rashes, often across the nose and cheeks and often brought on by sunlight. People may also have headaches, mouth ulcers, a high temperature, hair loss, and fingers and toes that go cold and change colour. It is more common in women, and more common in people of African, Caribbean or Asian family background. It is not contagious. It is diagnosed with blood tests that look for particular antibodies, and people are monitored with blood and urine tests, the urine tests checking for problems with the kidneys, which lupus can affect. There is no cure, but treatment helps: anti-inflammatory medicines, hydroxychloroquine, steroids and, for more severe disease, medicines that damp down the immune system. The NHS says to see a GP if you often get symptoms of lupus. Source: the NHS page on lupus.
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Multiple sclerosis
Multiple sclerosis affects the brain and spinal cord. Symptoms vary widely and can include extreme tiredness, problems with vision or balance, numbness or tingling, muscle stiffness or spasms, trouble with bladder control, and difficulties with thinking or memory. There are three main types: relapsing remitting, where symptoms flare and then settle; secondary progressive; and primary progressive, which worsens gradually without remission. It usually starts between 20 and 50 and is more common in women. There is currently no cure, but treatment often helps — disease-modifying therapies to reduce relapses, steroids, muscle relaxants and pain relief, alongside physiotherapy and other support.
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Sjögren's syndrome
Sjögren's syndrome is a long-term condition in which the immune system attacks the glands that make the body's fluids, so they stop working properly. The effects people know it for are dry eyes and a dry mouth, but it also commonly brings aching muscles and joints and extreme tiredness, and it can cause a persistent cough, a hoarse voice and swollen salivary glands. More women have it than men. It varies a great deal: for some people the dryness is mild, for others it shapes the whole day. Why the immune system behaves this way is not known — genes, hormones and an infection acting as a trigger have all been suggested. There is no cure. Treatment is aimed at the symptoms: medicines to keep the eyes and mouth moist, to reduce inflammation, to help with pain, and in some cases to damp down the immune system, alongside practical things like drinking often, careful dental care, protecting the eyes and staying out of dry or smoky air. The NHS says most people with Sjögren's syndrome live into old age with the same life expectancy as anyone else, though it is linked with other problems including arthritis, depression and, rarely, non-Hodgkin lymphoma. Its advice is to see a GP if you have symptoms of Sjögren's syndrome and they are affecting your daily life.
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