RE: I'm very sorry

[Guest guest]

Dear kathy Noel or Noel Kathy,

I just figured out how to post to the whole group too! (I think). I have

been monitoring the group for a few months and failed to get a message

through, also. I missed your previous e mail because I didn't figure out

how to post to the group until recently, so I didn't understand the

controversy. After reading your post, I still don't understand the

controversy. Your post seems fine by me and it was a relief to find out

that I am not the only e-group challenged person out there. People in the

group are amazingly sensitive to everything. Look back at old messages and

you may laugh at the miss-interpretations. Sometimes there is nothing

between the lines. 99 percent of the time, the info is great from this

support group. For example, the person who wrote about the Aveeno products

and oatmeal has change my life. I never knew I was so pale, and I am liking

it. I seldom flush now. Also, the information on Alpha hydroxy products

has helped me. I had a sunscreen with AH in it, and since I discontinued

using that, my skin has stopped burning. Someone in the group is also

putting together a photoderm survey which will be valuable information.

Doctors may be able to use it as well as roceaceans. I checked out the

website of the guy who posted about his products recently. Almost all the

ingredients used have been discussed as useful by the group, so he may be on

to something there. There are diets you can try, products that work or

don't work, even support for having a bad day. But then there are a few who

see something else in every little e mail and get the whole thing off track.

So, in closing, all I can say is fogeddaboutit. L.

I'm very sorry

I'm very sorry that I wrote to the members

directly instead of posting on the egroup. I did not

know how to post my letter to the egroup so I just

sent my letters to some of the members. I did not know

it would annoy them. Its not going to happen again. I

am going to send my previous letter again, this time,

it will go to the egroup. I hope it will work because

I've tried it before and it didn't work. Some of you

have already read my letter and some of you didn't .

So here it is, but I'd like to introduce a little

about myself first. My name is Amber Bivens. I'm 21

years old and I'm suffering with rosacea.(ugh)

If We want our skin to look and feel normal

with no redness, burning, headaches and all those

symptoms that you experience from rosacea, then we'll

need to fight it. We are told that there is no cure

for rosacea, and that we have to just deal with it.

But I don't believe in that. I believe that we CAN

FIGHT it. We need to demand that scientists and

doctors to help us find a cure for our disease. We

don't want just to be passive, hoping and waiting. We

can stand up. We can be aggressive!! Because there is

no cure now, we are trying to keep our disease under

control by using gels, creams, medication and lasers.

cea is caused by broken blood vessels underneath

the skin. These broken blood vessels underneath the

skin create the burning feeling, the redness, the

swelling, the pimples, etc. I don't understand why the

broken blood vessels can't be fixed?? Regardless, I

believe that we can win the battle, but I need you to

help me. I need everyone's support to fight this

disease! Just imagine, no more suffering from the

redness, burning, and all those symptoms. I know that

the medication can keep it under control but it will

ALWAYS be there. It will not go away. So, please help

me. Not only for yourself, but for the others, too.

I have a friend who has usher syndrome and

he attends an usher syndrome meeting once every year.

The doctors, scientists, supporters, and the people

who are afflicted with usher syndrome were discussing

the disease at the meeting. They are helping each

other by learning more about the disease and trying to

find the cure for it. The meeting was held in Canada

and next year it will be in Australia. He said that

the scientists have found something that possibly will

be the cure for their disease. It could happen to us,

too. It would be wonderful for us if we could

establish a group where we all could meet each other.

Maybe we could raise a fund to aid scientific

research? Don't wait. Do it!! I decided that i am not

going to be passive. I will be aggressive against

rosacea. Any comments????

Amber Bivens

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