no more complaining from me

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Originally posted by mark

hi everyone i was just looking back at my posts and i began to realize that I have been complaining alot about my red face from Kp rubra faciei. I know it's a hard condition but I have decided to stop complaining. I'm sorry for what I have done. What i figure is were all in this togetehr and you have all been such a help with my condition. i don't have normal kp bumps much at all very slight. So I do not want to help me only anymore. So instead even though I do not have normal Kp I will help those who do. I am jsut going to have to live with this until i get a laser treatment. please don't ignore this post. i know you are all so excited in this sulfur soap and oxy thing please hear me out. I am so sorry for basically worrying about me me me!. It's jsut cause i wish so much that I had the normal skin on my face. But god bless you all!
and please i just need to knwo what parameters mean for the laser treatment? that is all please respond. thank you all, mark

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Originally posted by Kim

Oh Mark I don't think of your past posts as complaining too much. I have read all of them but never posted a response. I really do feel for you, I have seen how evil people can be and what makes it even worse is the whole school click thing. Kids are just stupid, they just have no sense. It's rude to make fun and I know it must kill you inside. I think alot of you because you get up every day and you do what needs to be done. Keep it up and try to be strong, this thing will pass.

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Originally posted by Nicky

Mark you are so dear. Your posts are the reason we have this board. We all need the support. I really feel for you and what you are going thru.
I know your form of KP is distressing because you cant hide it like I hide my bumpy arms. I use to stay home from school sometimes because my face was red...not a good solution. Just hold on to your faith and know you have many friends on this board who understand. And remember it can only get better.God Bless you sweetie. Nicky

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Originally posted by Rick

Hi Mark, I know how difficult it can be to live with Rubra Faceii, especially since there are only a few of us on this board who seem to have this form of KP. There must even be some doubt that it is directly related to KP, since so few KPers seem to have it. Anyway, you wanted to know about parameters for laser treatments, so perhaps I can explain what I've learned from over 30 treatments! Lasers emit energy in the form of light at a fixed wavelength. This means that they enter the skin at a particular depth, depending on the wavelength of the laser. This wavelength is measured in nanometers (nm) and varies from about 515nm (superficial) to 1064 (deep). So Lasers have a fixed wavelength of light while Intense Pulsed Light devices such as Photoderm allow you to vary the wavelength by attaching different filters. However, I have had extensive Photoderm with no results, and while it seems to improve pure Rosacea, I have not heard of anyone with Rubra Faceii improving from Photoderm, though many have tried. Lasers appear the best bet. Let's assume you were treated with the V-Star laser. This has a wavelength of 595nm. The operator has to select a spot size, which means the size of the "pen" that he uses to treat your face. Some have a round spot and some are square or rectangular. The narrower the spot size, the more concentrated the energy, which can be good for small, clearly defined thread veins but is not much good for larger diffuse areas of redness. V-Star has a round spot and 10mm is a good size to try. Then there are two other parameters to set. The first is the amount of energy released with each shot. This is measured in Joules per square centimetre. The more energy you use, the more likely you are to produce purpura (bruising). There is a debate as to whether it is essential to produce purpura to get improvement. I have certainly had very aggressive Photoderm treatments where my whole face was covered in purple bruises for almost 2 weeks, and never got any improvement, so clearly purpura is not the holy grail! Less aggressive may be more effective. V-Star energies can be set up to about 10 or 11 J/cm2. The final parameter is the pulse duration, which refers to how short or long the pulse of light lasts. A very short pulse such as 2 milliseconds will be much more intense and powerful than a longer pulse such as 40 milliseconds. I believe the V-Star can be set at 2ms, 20ms and 40ms. So a typical V-Star treatment might be with a 10mm spot size, 2ms pulse duration and 8 J/cm2 energy. I hope this all makes sense. The bottom line is that there is no one set of parameters which will work for everyone with the same laser. Unfortunately, most doctors are not very familiar with Rubra Faceii, so you have to be proactive and get them to experiment. I know John on this board who has had excellent results with the V-Star laser, using parameters such as this. I'm sure he will share them with you if you seriously want to go and have a treatment. It is not advisable to tan before or after a session since increased melanin can reduce the penetration of the light. Too much sun can also make the flushing worse anyway. We can take comfort in the fact that there are newer and better lasers being produced all the time. Unfortunately, we are the pioneers of treatment for this condition, but every day brings us closer to the solution! All the Best, Rick

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Originally posted by kim r

no worries mark. hang in there. if you need to vent, what better place than this board. it is filled with people who understand where you are coming from and have the biggest hearts. hope the laser treatment works. In my prayers!