האמת יוצאת לעור – הפסוריאזיס שלי

האמת יוצאת לעור – הפסוריאזיס שלי


Hey, uh … I’m Ella, and… I have psoriasis. In honor of World Psoriasis Day, and following my personal experience with the disease, I’ve decided to make an educational video. So like in any educational video, we’ll start with the expected question – What the hell is psoriasis??? Well! Psoriasis (or its Hebrew name that makes it sound even worse – “Sapachat”) is a chronic autoimmune skin disease, characterized by skin patches, usually reddish-purple, covered with scales. Autoimmune?? What, is it someone who immunes themselves??? Hhhhh Not exactly… “Auto” means – self, and “immune” means it’s related to the immune system. In autoimmune diseases, the body’s immune system attacks cells and tissues of the body itself. In case of psoriasis, the skin attacks itself, skin cells divide excessively fast, and make the skin look… icky and gross! It affects the elbows, knees, scalp… A bit like when you make a homemade sugar crystal on a stick (for those of you who tried it themselves) psoriasis needs a “trigger”, it needs something to grab onto, so it could be scars, scratches, and the like. And in addition to all the nice things I mentioned, it also negatively affects the quality of life and has extensive psychological effects on patients’ personality. About 240 thousand Israelis, about 3% of the population, suffer from psoriasis in one way or another, and the symptoms usually appear around the ages of 10-30. So why is this happening? First off – it is important to emphasize: Psoriasis. IS NOT. Contagious. Psoriasis is not a genetic disease, but there is a hereditary component, that means that a combination of several genes may increase the potential of getting it. The outbreak may be affected by stress and anxiety, And once you identify the disease – it’s chronic. Most of the known treatments these days take care of the symptoms of the disease, rather than its causes. So how do you treat psoriasis? The treatments are divided into 4 main categories: There is a systemic treatment, which is mostly for severe cases, which could be pills, capsules, injections. I personally haven’t tried it. There is a topical treatment, which is only for the areas of the patches, it could be oils, ointments, creams. These things help peel the scales, slow the cell division rate, moisturize the skin. Some ointments contain steroids, which shouldn’t be used for long periods of time. And moisturizing cream IS MY LIFE! Another kind of treatment is a dietary change. It’s not 100% proven to be effective, but some claime that eating certain things and not eating other things, may help relieve the symptoms of the disease. Luckily for me, I’ve never been desperate enough in my life to make a dietary change for any purpose. The fourth type of treatment is phototherapy. But first – a bit of physics! We’ll start from the basics – This is the electromagnetic spectrum. This chart contains all kinds of electromagnetic waves, Arranged from the longest wavelength and lower energy, to the shortest wavelength, and the more dangerous waves. For example: radio waves, microwaves, visible light, X-rays, and more. Near the visible light, we can be see on one side the infrared radiation (IR), and on the other side – ultraviolet (UV). Ultra-violet radiation is divided into three main types, based on wavelengths: UVA – its radiation is the least dangerous of the three, our atmosphere barely blocks it, and it causes skin aging and may also cause skin cancer. UVB – is the radiation that is known as the main cause of sunburns, the atmosphere blocks only part of it, but it also can cause skin cancer. UVC – is the radiation that is the most dangerous of the three, But it is completely blocked by our atmosphere. Back to phototherapy! In spite of the risks I mentioned, UV has benefits too. It turns out that specific UV wavelengths have positive effects and they can help treat diseases such as psoriasis. Phototherapy – basically, light therapy – is divided into two main categories: The first and the best known is treatment in the Dead Sea. In the Dead Sea, which is known to be the lowest place on earth, the atmosphere is relatively thick, and so it actually filters out most of the radiation that is harmful to the body. Psoriasis patients come to the Dead Sea for a few weeks, every day they are exposed to the sun for a few hours, and for those of them whose Psoriasis is severe enough to have their trip subsidized by their health care… The results are usually very impressive. The second type, which I’ve tried myself, is treatment in a phototherapy clinic. Treatment in the clinic is organized and controlled. Two to three times a week patients arrive at the clinic to do the treatment, and every month or two a dermatologist re-appropriate the treatment plan to the current state of the disease. In the treatment itself we expose only the areas with the patches to the UV light, At first we begin with a small dose, and then gradually increase the dosage. The areas we don’t want to expose to the UV light – we cover. And to protect the eyes – we put on goggles, That look really stupid… Phototherapy is also divided into 2 types: The first type – PUVA – I didn’t get to experience myself because I’ve heard it’s for more severe cases. The letter P represents the material psoralen, and the rest of the word is just UVA rays. The psoralen can be either swallowed or applied to the skin before the exposure, and it increases the skin’s sensitivity to light. From what I understand from the internet, there are relatively more side effects to it, so it’s not that common. The second type – my savior!! – is NB-UVB. NB means a narrow band, which is a very narrow wavelength, And UVB… is UVB. Studies have found that exposing the skin to a wavelength of 311 to 313 nanometers, is the most effective to diseases of this kind. This kind of treatment doesn’t require psoralen, you simply enter – hello light! – Goodbye! And I think that’s all you need to know about this subject. And now – my story… The first time I had signs of psoriasis was at the age of five, on my scalp. As you can see here, and here, and… oh, sorry, that’s just a picture of me in the snow… and here… Instead of dandruff that goes away after shampooing with Head & Shoulders, I had a very thick layer of scales on my scalp, which required a bit of a more serious treatment. Before we knew about actual preparations to use, every few weekends I would sit in a chair in the living room, and my parents would spread olive oil all over my scalp. After several hours, they had to help me peel off the scales, and then of course I had to take a shower to wash off the olive oil from my hair. When we went to a dermatologist to find real treatments, I got preparations that are even more difficult to wash off. From the age of 10 the disease began to spread – in addition to my scalp – to the rest of my body. A bit on my face, legs, hands, other places … The impact on my quality of life and the psychological effects came in a variety of ways… For many years I didn’t wear shorts. Going to the beach or the pool, was a privilege that I usually couldn’t allow myself to have. I was always aware of the white scales I was scattering around everywhere. And generally I was always surprised when anybody dared to come near me. But overall, over the years, my psoriasis (which was in a relatively easy state) was not a significant part of my life. The school routine made it hard for me to apply the ointments regularly, (And applying them is nasty and makes everything sticky anyway) So every time I got used to having reddish-white spots on the body. And when I really wanted to look decent to an event, I would do a thorough ointment treatment that would solve it, until the next time… However, I almost didn’t suffer from harassments or nasty questions from people, simply because the more I had to hide, the more I got better at hiding it. Everything was good and stable – until I joined the army… In honor of the IDF, I did my usual ointment treatment before the enlistment, and everything was great on that day. Alas, as boot camp are – everything is so stressful, you don’t even have time to sleep, And even though my commander allowed me to take especially long showers, i still didn’t really have time to apply any ointments… And after only two weeks there, things got so much worse that I had to get myself a “shoe permit” (a permit that allows you to wear other shoes instead of the army shoes) ASAP. The situation in the rest of my body wasn’t great either, but on my legs, my skin grew so thick, and chafed against my new army boots, that it became truly unbearable. Following the dire state I was in and after many exhausting bureaucratic procedures, I got a “shoe permit” for six months, my medical profile was lowered from 72 to 45, and thanks to that I started to be treated in a phototherapy clinic. After only three months of treatment – there was a significant difference: When my long “shoe permit” finally expired – I realized that I no longer need to renew it. I no longer had a reason to be afraid to roll up the sleeves of my shirt, I could allow myself to shave my legs(!!!) and go to the pool for first time in years. The improvement I felt in my self-confidence since I started working, didn’t happen just because as a network administrator I had to provide tech support to dozens of different users daily, it also came from the outside, when the biggest problem in my life gradually diminished, and left me, with no choice but… to be proud of how I look. Note that I wore the shirt of… “Space that is like dandruff” of mine…

9 Comments

  • Anne Yosefa Sartiel says:

    Ella I am full of admiration for your courage and technical ability. The film is wonderful, I only wish I could have slowed down your speech a little….
    All my love and appreciation

  • Gavers23 says:

    אני שמתי לב לחולצה, חשבתי שזה בכוונה… ☺

  • Adam Sartiel says:

    מקסים. אינפורמטיבי, אמיץ ומדויק

  • אבי פה הערוץ הרשמי says:

    כול הכבוד

  • biggus sippus says:

    סרטון מטופש ומיותר, אני גם חולה פסוריאזיס.
    זאת מחלה לא מדבקת וכל הקטע של הסרטון שלך דפוק לחלוטין.
    את מי זה מעניין בדיוק שיש לך מחלה?

  • שירה שיר says:

    סרטון חמוד:) גם אני עם פסוריאזיס לאחרונה קשה וגם אישית נמאס לי משמש כי זה עשה לי נקודות חן וגם כי בים המלח לצערי גיליתי בפעם האחרונה ששהיתי שהשומר הציץ לסולריום של הבנות.
    אני כן חושבת לנסות דווקא את הזריקות אולי נראה. חידשת לי דברים ובאמת משעשעת החולצה שלך:)
    רק לא כל כך הבנתי את החלק של הצלקות. למה פסוראיזיס אוהב צלקות סורי לא הבנתי זאת.
    ובאילו משחות השתמשת? מקווה שאילו בלי הזפת כי כשהייתי ילדה שמו לי את המשחות זפת וזה זוועה

  • 22 alison says:

    מהממת תודה רבה על הסרטון♥ אני הולכת לפוטותרפיה מחר לביקור או יעוץ ראשון מקווה שהכל יעבור לי. אני חולה בפסוריאזיס גוטטה שזה סוג אחר אבל לא פחות מציק. לאחר כל דלקת גרון ואני חולה כמעט כל שנה אני מתמלאת בקשקשים פסוריאזיים מגעילים שגורמים לי לרצות למות. אבל זה עובר נקווה שיעזרו לי מחר♥ ואת מהממת אני בהיתי במסך בצורה שדיברת ובהגשה המדהימה שלך, תודה לך את מדהימה ברמות!

  • Iris Priva says:

    את נהדרת . יש מוצרים שיכולים להקל על פסוריאזיס קל לאו דווקא כאלה מרפאים….?

  • שירה הכט says:

    גם לי יש פסוריאזיס ואני בת 11(ביום העצמאות הייתי)

Leave a Reply

Your email address will not be published. Required fields are marked *