Professor Rafi collapsed on “one of the rarest diseases”

Hereditary angioedema is a fairly rare disease, manifested by recurrent bouts of swelling and edema in various tissues in the body. The symptoms of the disease are caused by a deficiency in the enzyme C1-INH, whose main function is to inhibit circulating biochemicals that are activated mainly in the event of an injury or inflammation. Although it is not very common, and exists in one person out of 50,000 people, angioedema has a significant hereditary component, and the quality of life of those who suffer from it is significantly affected. Listen to Professor Rafi Carasso’s podcast “Advance Medicine” on 103FM Radio:

On the occasion of the month of May, known throughout the country and the world as the month of awareness of the disease, Prof. Rafi Carasso spoke on a special podcastExclusive to 103fm digital ‘with Basmat Friedenreich-Wurzberger, chairman of the association’ Earth ‘, which puts on its banner the task of locating angioedema patients in Israel, along with trying to provide them with all the medical information and support in dealing with its symptoms. So she stayed close to the spotlight, and talked about the importance of awareness of the disease in order to enable a good and healthy life alongside her as well.

“It is a disease that results from a deficiency of an enzyme in the complementary system,” she began. “You can get up in the morning and continue your daily routine, and suddenly someone will tell you that your eye is swollen. It is definitely one of the rarer diseases. It varies greatly from person to person. Some people will experience one or two seizures all their lives, and some people will experience two seizures a week for life. It’s very difficult to know how it will affect everyone, it’s very individual. “Swelling ranges from 24 hours until it reaches its peak, and within a maximum of 72 hours it will go down completely. The disease can be diagnosed with a simple blood test.”

“It is very dangerous, because once the disease affects a vital organ such as the respiratory tract, if swollen in the throat, one can die from it. Sitting, and a defect in the gene that causes the enzyme to be inactive. To the best of my knowledge, all the genes that lead to it have been identified. “These organs because they thought that was the problem, and in worse cases open the abdomen, see nothing and send the patient to a psychiatrist.”

“It is clear to us that there are more than 200 patients in Israel”
Although the disease is not yet very well known among the general public, there are 200 diagnosed people across the country who have applied to the ‘Earth Association’, who need recognition of their condition. “It is clear to us that there is more,” said the chairman of the association, “some have not been diagnosed and some we do not know. Even the hospitals that have centers that treat the disease, are not aware of it because it is so rare, because they are not encountered so much. It also happens because she mimics other diseases in her seizures, it is much easier to go for these diseases. “

Despite the severity of the disease, over the last few years its treatment has progressed remarkably. Basmat excitedly shared in her conversation with Prof. Carasso: “We have come a long way, I want to say a big thank you to the doctors in the country who treat the disease because they made us menopause blue. “Taking them alone at home and they prevent seizures, it completely changes your coping with the disease.”

Prof. Carasso and Basmat Friedenreich-Wurzberger (Photo: 103FM)

What, then, are the treatments given in the country to prevent seizures, and can they be taken without fear? “There is oral therapy that is taken every day by taking a pill, and there is an injection that is taken twice a month. There is no difference in effectiveness, it is very dependent on the person. Some people the injection will not work and vice versa, “There was a solution, I would walk with seizures and have to live my life as usual when I suffer real suffering. .

About the blessed work of the association, she said: “The association was formed about 13 years ago by a lovely girl who sought a cure for her questions that had no answer. She imagined that she is not the only one in the country, and together with Dr. Reshef from Sheba Hospital founded the association, To help patients in all their daily dealings, in receiving treatment, in questions in front of the bureaucracy in front of the health funds and there is quite a bit, in their eligibility for medication and help with the mediation of the right doctor for them. There are 6 centers in the country that specialize in the disease, but the highlight for us is raising awareness of the disease, so that when the next person comes to the emergency room, it will already be known to someone. “If 20 years ago we would have gone head to head because we have no way of taking care of ourselves, today we can, and unequivocally the ball is in our hands, improve the quality of life and live our lives successfully.”

“Some people need disability percentages and benefits to live their lives”
At the end of the conversation, Basmat Friedenreich-Wurzberger emphasized that although a lot has been done for the patients in Israel thanks to the association, there is another vision for the future. “Nowadays when there is medicine, something we blue people are dealing with is the matter of exercising the rights in Social Security,” she admitted. “Angioedema is not listed as a rare disease in the Social Security book, and we want it to be listed in it, and treated as such. Some people need this percentage of disability and allowance to live their lives. It will take more time. “

In collaboration with the ‘Earth’ organization, it is presented as an independent sponsorship by NewPharm Israel.


Source: Maariv.co.il – סגנון-לייף סטייל by www.maariv.co.il.

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