‘I have this shadow over me’: lupus patients share their experiences living with the disease | Health

WJuliet Safri, 49, was diagnosed from London lupus in 24 years, and she was at the beginning of her life. “When I received my diagnosis in 2000 … until I felt that invincible point,” Safri says. “I was traveling two or three times a year, I bought a new car. I was spending my life in my early twenties.”

The SAFFREY Diagnosis came after experimenting with symptoms such as severe fatigue, to the point that she was sleeping at work, as well as joint pain, headache and oral ulcers. Fortunately, the GP doctor immediately suspected lupus when Saffrey presented these symptoms and received a relative speed. “After diagnosing his injury, I remember that I am thinking about how this will change my life? I was in shock, one minute I am invisible and the next moment I am not. I now have this disease, this shade above me.”

Saffrey usually tried to live her life as she was able to do so, but at the age of twenty -eight years old, she suddenly started a life -threatening glow experience.

“I started to feel the disease, and made the pain in my legs impossible to walk without help, and I suffered from the fog of the exhausted brain and my skin rash covered cheeks,” Safri says. Then she had a seizure at home in bed, and she was transferred to the hospital in an ambulance. She was told that lupus had affected her brain. “My health deteriorated quickly. I lost my memory, my hair and my weight fell to 4½ stone.

Since then, she says that living with lupus is still a continuous challenge: “I had to control my working life, accept my own restrictions and face emotional losses to live with a chronic disease. In addition to lupus, I developed osteoporosis, type 2 diabetes And heart disease and night blindness, and all the side effects of the presence of lupus and medications that I will need for the rest of my life.

“But despite everything, I am indispensable to the amazing specialists in Uch who were beside me at every step on the road.

“My husband was also a rock, as he was interfering in both my mother and my daughter for our daughters when I could not. But her flexibility was great. “

Carol Rikits, 60, from London, was diagnosed with lupus in 1995. But unlike Safri, who was lucky to have a doctor, she understood the symptoms of lupus, Ricks had to fight for her diagnosis. “When I expressed his fears of my health to one doctor, and I think something is happening with me, but I was not sure of what it was, he told me what a matter is with you, when you are thirty years old, Rikits says:” You start to collapse. ” I was really angry when he said. “

After Ricks eventually received her diagnosis, her health was made as a bend in 1999 when complications led to a blood clot in her left leg, which led to phospholipid syndrome, an immune disorder that increases the risk of blood clots. As a result, Rikitz has not been able to continue working and has not been over the past 25 years.

Treatment may also be held by developing allergies to some of its drugs. Rickts believe that there should be more awareness and research into what can be done to treat the disease.

“Unfortunately, there are not many medications for lupus disease, and for some of the medications there, many of us cannot take them because of their sensitivity,” says Reektes. “Some people understand what lupus essence, but many other people will stare with you empty because they do not know the situation or they are not important. But it certainly must be exposed a little more.”

Amka Egypt, 42, from southern London, was diagnosed with lupus around her eighteenth birthday, where she was symptoms including severe fatigue, red eyes, and joint pain. Initially, its symptoms were rejected as pressure due to its tests at the level of A.

“I was not happily realizing the effect of my diagnostic on my life,” says Egypt. “I haven’t heard of lupus … I would like to say that at the GP level at the time, they were very naive Lobos K. [potential] Diagnosis and condition that justifies intervention. “

Symptoms, which were surprising to appear, advanced to become more dangerous, which led to severe anemia, weight loss, stomach issues, and the deterioration of kidney function in EJIBE.

In the twenties of my life, lupus did not really affect my life to the point that I needed to change anything, for example I was working full time. Egypt says: “I was in the mid -thirties of my life when my condition started to really affect my daily livelihood and style My life. ”She had periods in which she could not work, spent several months inside the hospital, and she was in dialysis for more than three years before performing kidney transplant in 2019.

Since its transplant, EJIBE has better managed its symptoms than before. But she believes that there is still a long way to cut it with lupus treatment.

“I think … it might be better,” says Egypt. “Wise lupus is a very complex condition, developing a treatment as it stops part of the immune system, which may be more complicated than treating other situations. But I think it is improving.”

She says that the lack of treatment options may be due to the fact that nine out of every 10 people suffer from lupus are women, where health issues are often rejected due to “Women hate.”

“I think it is with women’s issues, it can be rejected because men do not have anything equivalent, so pain and fatigue can be rejected as” the month “while there is no comparison for men.