Why Phototherapy?
Psoriasis, Phototherapy and the Future.
Soaking some ultra violet rays in a beautiful tropical beach like this one "Boca Chica", in the Dominican Republic will not trouble us much, but when they talk about having Phototherapy in the same town we live, even if it is at a short distance from home, it does not seem very convenient. There is no question that this therapy is inconvenient and time consuming, particularly when it is conducted outside the home.
Who in their right mind will like to travel 3 times a week to some location to get naked and walk into a radiation machine, following some physician prescribed schedule? I guess, not to many of us.
But, there are certain realities for those of us suffering from moderate to severe forms of this ailment that make such a time demanding therapy to be considered.
Now a day, time is a commodity we do not have enough of, but that people with psoriasis have learn to manage as if looking for a hope of keeping under control this extremely time demanding illness.
Keeping yourself moist for most of the day is a challenge on itself, just drying your body after a shower without rubbing your skin is a task. Applying the ointments 2-3 times a day and waiting naked for the stuff to dry is almost a punishment.
How about that mental torture? That constant and daily wondering about everything. What you should eat and what you should drink? or what was it that you ate yesterday that today your psoriasis feels so bad? For some Psoriasis sufferers it takes a couple of days to notice it. Some others feel it within hours.
Should I start taking Boswellia, Turmeric, burdock, green tea, carrot juice, vitamin E, fish oil, arsenic? What was it that I read about glycerin? Let me go and check it again. Every single day we are looking for something to make it better, to make the hurting stop.
How about the constant itch, the burning, the scratching and the bleeding, the thinning of the skin, the leaving behind a trail of your "white stuff" everywhere you have been or carrying them in your shoulders like you haven't taken a bath, or look at a mirror in ages? Leaving my DNA everywhere. I always said that if I committed a crime they will find me in a New York minute. (Johnny Carson once said, it's the interval between a Manhattan traffic light turning green and the guy behind you honking his horn.) No wonder we feel like nobody knows what we got. It is not true but that is the way we feel.
With the passing of time, we don't even believe our Dermatologist, maybe we did in the initial consult when the mystery was solved and we found out what it was. Maybe we believed when he or she assured us that it was going to get better. But we begin to have serious doubt when we began to hear "let’s see if this work for you?"
We know that our Dermatologist does not knows what it feels to wake up in a bed full of blood as you turn and toss throughout the night. You know that he or she is not the one that gets awakens every single time they turn in their sleep. As a matter of fact most of them went into that field of medicine precisely to have a good night sleep.
By now, we painfully know that factors such as fatigue, pain and sleep disturbance have a significant impact in our day-to-day life, our mind and our spirit and that we are alone. Psoriasis is a personal disease.
Our Dermatologist will not be the one full of ointments and creams, or the one that has to worry all the time about the white stuff on your shirt or blouse or the pain that you feel caused by your clothing as you walk, or the skin peeling off your ears for everyone to see.
They will not be the one that cannot walk because his or her feet are bleeding nor are they the one having problem grabbing things because their nails are hurting at the modest touch.
Our Dermatologists are not the one that feels those hard areas under their skin or that are noticing right in front of their eyes and on a daily basis how their skin is going away and believe me, it does goes away. If you are a "severe sufferer" of this disease, you must know that once that part of your body is affected, no matter with what or for how long you make it look good again sooner or later it will be back once you stop the treatment. Psoriasis is resilient and it does not have a cure.
We know for sure that our Dermatologist are not the one without any sleep the following morning and that he or she will not be the ones that after years and months of this and without an end in sight will experience those welcoming thoughts of dying.
Now, let me say something for the Dermatologist, just because they don't know how it feels, does not mean that they don't know what you feel or what they are doing. With some exceptions, they do know and understand better than anyone else what we are going through, and most of them truly care.
How sure are we about the numbers?
Psoriasis is becoming stronger and growing in number every single day. Forget the 7.7 million and please overlook the percentage 2, 2.5, 3, 4. It does not matter.
Let's assume that there are only a miserable 2 percent of people with psoriasis.
How do we know this?
Did someone take a survey?
Yes that is about it. You were asked about it and if you had it you said yes!
Well, they could have asked me when I was 15, 20, 25, 30, 40, 43 and all in between and I would have given a negative answer. Do you have psoriasis? .. What? Hell NO!
I didn't have any signs or any reason to believe that I will get it. As a matter of fact I didn't know it existed.
My mother had some red dots here and there but always under her clothing and, it was my mother. She had everything, including a gone kidney, gallbladder, appendix, a complete hysterectomy and only God knows what else.
I know her mother did not have a single complain about her skin but, my grandfather is another story. I never met him. You see, he died before I was born so I never had the pleasure. But because he died so very young he never developed Psoriasis. Plus, lets face it, he lived in the tropics and you know that people in the tropics, because of that beautiful Ultra violet light kind of hide their disease for a longer time, sometimes it never shows.
I know,... I know one in 15% if is only one parent, etc., etc. but remember this is all based on surveys or by extrapolating data of some country like England where most of the health care treatment and diagnosis gets recorded.
You know that here, as well as everywhere we have people that are starting to suffer from Psoriasis and they keep on walking, they don't know what it is and they don't mind it. Yet. They get some spots, scratch a little bit here and there in the winter and then summer comes alone, they are gone. How many of those answer that survey?
What about those in poor under develop countries? Those countries where the patient just walks into the pharmacy and let the pharmacy owner or the attendant evaluate, diagnose and prescribe something. Keep in mind that in most under developed countries the Pharmacist is nowhere to be found and most of the time, pharmacist degrees are rented to the various owners. Do you really believe that people in these countries are being surveyed?
You just wait. The greatest percentage of Psoriasis patients are passing it alone to their sons and daughters. Some of them will experience future deterioration of their condition and in some of them, the lucky ones, will disappear and never show up again.
I do not know the number, and I'm positively sure that nobody knows, but I believe that there are at least 6 percent of people that have Psoriasis or the conditions to develop the disease and that as result of propagating ourselves we are multiplying this number every day. I also know that because of the large number of alleles involved in the disease manifestation we are suffering it or unknowingly passing it alone to establishing a generation of carrier.
I have two sons, none of them show the disease but they are in their 30s, they live in the southern United States, where irradiations levels are better and they are not taking any medication or have received any surgical procedure that will bring out the disease. I hope and pray that neither of them will developed it and stays as beautiful as they are now. I would have never procreated a family if I had only known that I could pass on this terrible handicap. But that's just me.
The Uninsured.
Please imagine for a second the people that are suffering this disease without access to medical care, or without money to buy a prescription. People that are trying desperately to go to work every single day and that go on with their lives with this condition unable to work and without a helping hand.
These are the people for whom our centers are created but at the same time we want everyone to give Phototherapy a chance because right now is healthier and safer than anything that has been around for a very, very, long time.
It may be inconvenient, but so what. We are tougher than that.
We do not sell Phototherapy machines, We do not get or accept any financial benefit or compensation from it or have any invested interest in the technology, our organization does not take any fees or sponsorship from any of the manufacturers but believe me when I tell you that It does not matter what you are rubbing, taking, injecting or having right now. If you are not on Phototherapy, give it try. It is effective in almost 80% of users and most of the recent research shows that it will help you reduce the medication that you are actually on.
Narrow-band Phototherapy has the highest proportion of patients with clearance or good response together with Photochemotherapy (1) and it is safe, very safe.
The Gene Power!
In the center of every cell in our body, there is a region called the nucleus which contains your specific DNA. Each of us has more than 30,000 genes and many of these have more than two possible alleles (male only have 1 X allele chromosome) usually one dominant and a recessive one. It is within this soup that our cure awaits. Lets hope that as genome-wide association studies progresses, replacing individual genotyping with genotyping of DNA pools techniques become more efficient. Only then, a cause for this disease may be found and a cure may be feasible.
How important is a cure? Unless one is found, sooner or later humanity is going to get it, and there is not a thing anyone can do about that, and the way the progress with Alzheimer goes; it appears at least for now, that humanity will also be favored by forgetting that it has it.
I believe in Advocacy, I know that education and getting the word out is important and that a cure is more than needed but I'm not going to sit and wait for it. Neither should you. Help us help those that are suffering now with no place to go other than the dark areas of their mind.
To get answer on how our program works visit our foundation Q & A.
Jose Mejia
REFERENCES
1- Photochemotherapy showed the highest average proportion of patients with clearance (70% [6947/9925]) and good response (83% [8238/9925]), followed by UV-B (67.9% [620/913]) and cyclosporine (64% [1030/1609]) therapy. In the second internal meeting, the following sequence for the treatments was defined: UV-B, photochemotherapy, methotrexate, acitretin, and cyclosporine. In 78% (69/88) of patients treated after the introduction, the guidelines were followed to determine the treatment choice.
