There is such a girl in Morocco, Africa. Because of a rare skin disease, she can’t be exposed to the sun, otherwise there will be obvious marks. If it is more serious, it will even lead to skin cancer or eye cancer. Because of this disease, she has not been out in the daytime like a normal person for more than 20 years.
according to the daily mail on July 27, during the day, she needs to wear a mask like a “space helmet” to protect herself from ultraviolet radiation. In order to cure this strange disease, she has done 55 operations, and removed the potential areas of the eyes, tongue, nose, head and other parts, and after that, she still needs continuous protection and treatment.
the girl’s name is Fatima. She is 28 years old. She came from mohamediye, Morocco. She suffered from xeroderma pigmentosum for the first time when she was two years old. After seeing many doctors, she was diagnosed with xeroderma pigmentosum.
this is a rare genetic skin disease. About one person in 100000 people will suffer from the disease. The skin of the patient will be burned when exposed to ultraviolet rays and cannot repair itself.
in order to resist the damage of ultraviolet rays, Fatima has to wear sun protection gloves and helmet every day, even in cloudy days. In addition to wearing these things, she has to apply sunscreen every other hour, with a sunscreen factor as high as 90 times, while the sunscreen used by ordinary people has only about 30 times.
in addition, the windows of her home are also equipped with special ultraviolet filters, which shows how strict sun protection is needed for the disease. Fatima had to stay at home all the time during the day because of this strange disease. At night, when night fell, she could not start her day’s work.
in the process of growing up, Fatima was unable to accept her health for a long time. At the age of 13, she had to drop out of school and finish her studies at home because of her worsening condition.
at the age of 16, Fatima began to study her illness on the Internet. She found that the disease was very dangerous, and people who had it generally died prematurely.
Fatima is indeed a very strong girl. Every time she gets sunburnt, her skin will turn red, which may increase the risk of skin cancer. She has to undergo surgical resection. In the 55 operations so far, Fatima has never complained of pain.
because the condition is too rare, Fatima has begun to popularize the disease and hopes to let other patients know that they can still live a complete life by sharing her own story. She explained that she was optimistic and her family supported her, and she believed that she could inspire more patients like herself to actively deal with this strange disease.
at present, there is no known cure for xeroderma pigmentosum. According to the national health service, only 70% of patients in the UK can live beyond the age of 40.
even though most of the patients died young, Fatima’s mentality is still worthy of admiration and learning. She believes that no matter what happens, she will take every day as the last day of life. Life is too short, so we should live fully.
Fatima’s attitude towards life is moving and admirable. If a young girl suffering from a rare disease has such a positive and optimistic attitude towards life, why should we ordinary healthy people not live a good life?