Mutant really familiar to modern man, they become very popular in a variety of anime, film and television programs, recount. I like this theme of the film, "X-Men" series, the US drama "Heroes", "Fantastic Four", "I am number 4" and so on, all my love to watch. In these films, mutants each have magical powers, or go it alone or team collaboration, experience pain and suffering, to be a hero and legend.
However, as mutant real life, not so lucky. Because the gene mutation is often not what brought Taking shift was super powers plains of flight, but a variety of not being understood by a variety of rare abnormal.
For example, I have a place different from ordinary people. My office is different from ordinary people of my white blood.
Oh, do not misunderstand, I'm not leukemia, leukemia patient's blood is not white, is still red . My blood out of the body after standing for some time, is white, like this:
This is called high blood chylomicron blood, a hyperlipemia. It floats in the blood above the white substance is called chylomicrons, its composition is fat, specifically triglycerides (triglycerides).
In fact, ordinary people want their blood is not difficult to apply cream: as long as people eat too much high-fat, high-sugar foods, drink a short time to open large pieces of meat, it is also possible to eat in such a way hyperlipidemia. Then, the most likely cause acute pancreatitis, and then lead to organ failure and died.
And my special is that, even if I eat light food every day, then fasted for 12 to childhood blood, the blood will be the case. The reason I have hyperlipidemia problem, because genetic defects. My white blood problems, there are so few names in medicine: lipoprotein lipase deficiency (Lipoprotein Lipase Deficiency, referred LPLD), familial hyperchylomicronemia (Familial Chylomicronemia syndrome, referred to as FCS).
One in a million
We describe a good person, a rare, often with the cream of the crop, better than one to describe. The occurrence rate is LPLD is a real one in a million. According to this probability, Beijing, Shanghai, two cities together also join in less than 50 people; the whole of China is estimated that not more than 1,400 people; the world is so big, most will be able to find a mere 6,000 Bale. In fact, I lived for thirty years, until November of this year, I have never seen another person like me.
In November 2015, my wife and invited to participate in an advisory committee, this committee I think the same patients and their families make up. Commission as a whole a total of eight people, four patients two men and two women, two mothers two families of four wives. This is the first time I face every day with other people LPLD meeting. We understand the challenges facing each other in their daily lives, suffered misunderstanding, we share their knowledge learned to deal with LPLD process, the available resources. This process also made me realize the need to explain and you shall know each other's feelings, to be understood that the person to relax. This will be the face of his great healing effect on older people who I see hope, may see their own lives, and I also own example to encourage the two children's mother, their children Although difficult to face such a life, but they can have a good future, we can grow, adult, successful career.
White people looking for blood
After coming back, I deliberately search for information about the cause of hyperlipidemia due LDLP online, find useful information and rare. Children who found LDLP also lead to news events, such as Henan in 2014 , "Xinyang babies suffering from abnormal blood was actually milky" in Yunnan 201 "newborn babies suffering from abnormal blood from red to cream" in 2011, Gansu "was born 19 days babies suffering from celiac the bloodstream all white " . Read the news, I get the impression that most hospitals LPLD most doctors for diagnosis, treatment and daily conditioning and no corresponding understanding. This does not blame them, as they are not too large hospital experts, the probability of encountering LPLD much better than winning the lottery may be high. The latest report also has good news is that domestic institutions have been able to LPLD be diagnosed, I had tried to contact the agency via e-mail, but there has been no reply. LPLD adults have been reported so far I have not found. They may, like me, have each in their respective corners, each put up with the pain, there is no sound.
I decided not silent, because I know how LPLD brings difficulties and challenges, but also patients and their families understand my pain and struggle. I think I started by telling their own story, from the same link with my patients together to learn how to get along with LPLD. I will through their own learning, the knowledge of foreign LPLD related to the domestic popularity.
From time to time I'll write about LPLD, FCS, hope to, to find more patients.
2015-12-08 初稿