Rachel is a living oxymoron, burned by waterby Angelica Basile - 2016.10.12
Rachel Warwick knows that one shower too many could kill her. Since she is one of the 32 people in the world who is allergic to water. Rachel, 29 years old is an English woman who suffers from this super rare illness, called in scientific terms aquagenic urticaria, that affects one newborn out of every 230 million.
She was diagnosed at the age of 12. After having just finished swimming, she felt as if her entire body were on fire. A sensation not unlike that caused by fire, but more intense, on-going and diffused. From that moment on, only the use of super-strong antihistimines could keep her alive. There is no cure for her illness. She can wash herself only once a week and when she does, it’s literal hell. For this reason, she avoids sweating by wearing extremely light fabrics. She also has to avoid sports of any kind. And to quench her thirst, she has to drink milk instead of water. Even though milk also causes her problems, her body’s reaction to it is tolerable. When it rains, she stays home. And she tries to avoid watching any emotionally draining film that might cause her to shed a tear or two, which for her could bring about an anaphylactic shock. A life-no life situation. That is possible thanks to her husband who not only cooks and cleans, but who also has to be very gentle when he kisses his wife, seeing as saliva can cause a major rash.
What causes this strange illness? The most widely accepted theory is that it is not water itself that is the problem but rather, the chemical components related to it, such as flouride and chlorine. Another hypothesis suggests that the the cells of the superficial part of Rachel’s epidermis, called mast cells, might release an inflammatory protein called histomine upon contact with substances that are dissolved in liquid. Which, in turn, activate certain “itching neurons” that cause redness, blisters, welts, swelling and even vomiting.
Omalizumab, a drug used to treat asthma, might be the cure. It has shown promising results in individuals with very particular allergies, such as sun allergy. But due to the fact that there have been no clinical trials for its use in Rachel’s illness (not a possibility due to the limited number of people with the condition) the British healthcare system will not cover the cost of this extremely costly therapy. The consequence being that it is impossible for her to pay the thousands of pounds a month that would be necessary. In the meantime, while the medical community decides or not to take up her cause and that of the other 31 people in the world with the same condition, Rachel can only try her best not to cry or sweat. And to kiss her husband as little as possible.
How to provide relief to sufferers of obsessive compulsive disorder
Just watching other people wash their hands provides relief to sufferers of obsessive compulsive disorder and might be enough to reduce the urge to perform the action in real life. The findings, led by Cambridge University scientists, could lead to video-based apps designed solely for sufferers. If proven in further Read More.
Modification of human DNA brings hope for fighting rare diseases
American researchers have just succeeded in completing a series of experiments that involve genetic editing of human embryos. The results demonstrate that it might be possible to someday correct defects in DNA associated with congenital rare diseases. This outstanding study conducted by the Oregon Health and Science University, utilized a Read More.
Serious risk of colorectal cancer for obese teenagers
Adolescents with obesity problems risk more than their peers, as adults, colorectal cancer. The alarm has been sounded by a maxi-research released by the Rabin Medical School and Tel Aviv University. They have monitored the state of health of more than two million adolescents who underwent screening and clinical examinations Read More.
Nobody beats Italy when it comes to rare diseases
Italy represents the highest number of centers of excellence in Europe for rare diseases. The country’s network of these highly specialized centers (ERN – European Reference Networks): amounts to 189 out of a total of 942 in Europe (about 20%). Representation of patients in European Patient Advocacy Groups (ePAGs),is also Read More.
Pet-therapy in Milan airports to reduce stress
Pet-therapy in Milan airports to help the small and big passengers relax before takeoff. This is the initiative launched by SEA together with the association Amici Terapeuti Onlus. In fact, for the entire summer, in the boarding areas of Linate and Malpensa, little four-legged friends will make the waiting time more Read More.
Instagram helps women break the silence around miscarriages
Create a space for women who had a miscarriage so they can share their experience. A chance to break the taboo, and the resulting silence that surrounds this traumatic experience. Such is the idea launched by American psychologist, Jessica Zucker, which led to "Ihadamiscarriage”. The initiative is actually an Instagram page Read More.