i have recieved a few org notes from folks that are worried about me, and while i appreciate the concern it was not my intention to scare or worry anyone.

i am dealing with a non life threatening, although life altering disease that i have had since i was eleven years old. i am getting older now, and the disease is progressing, although a cure has yet to be found. i do an average of 2-3 hours a day of research on this topic and have been for the past few months with no leads as of yet...

people will ask me why i am talking about this here, and i have argued with myself on that for the last few days. heres the best answer i can give to you.... the disease has been around now for quite awhile. however, no cure has been found. as long as it remains on the rare disease list, there will never be enough money spent on drugs and or therapy to warrent the government to find a cure... at least thats my understanding. pharmaceutical companies will continue to pass out the drugs that have not helped, doctors will continue to prescribe them, and people who suffer with this will never find any answers.

so, i ask myself what someone like myself can do to help others in my position. surely, being quiet about it is not going to make things go away.... thats half the problem with this horrible thing is that people dont talk about it to begin with due to its nature.

i am aware that this disease is not my fault, it is genetic and is something i was born with... i have heard more than a handfull of doctors tell me that by comming to them, i am asking them to change my genetics, which of course is not possible. still, it doesnt change the way a person feels who has this. and, as i have dealt with it the best i can for years, things are changing in my household. my personal disease is taking a turn for the worse and things are quickly getting out of control.... thus the thread i started asking about the mayo clinic. my doctor is becomming worried that with the increase of issues we are facing, my system may become septic, leading to a whole different problem. that in itsself is enough to worry anyone.... however, my immediate problem is that i believe i have passed this to my daughter. she is showing the beginnings of problems i remember seeing many years ago.... as a mother, that breaks my heart. i am more motivated to find answers now due to the fact that i dont want my baby girl to have to go through what i have.

with no real answers out there, and the fact that im running out of doctors in my surrounding area... i have made a decision to go public with this and see if i can make enough noise to get folks some help. i thought about this for quite awhile, and i came up with something that may sound strange to a lot of you, but heres why it makes sense - and this is where i need your help. i sent in a letter to oprah. she is a woman that is plugged into many people at once, has the ability to find the top doctors who may know something we dont know in my area, and she has the ability (though im not sure she would do it) to get notice from the government demanding further tests or a step up in research. at least that is my hope. i know it sounds crazy, but hey, at this point, im willing to try just about anything. if it comes down to it, and i need to have support from the public, i will ask any of you that can to send an email to her asking for answers. you know what they say, the squeaky wheel gets the attention. also, i needed to make sure that i could even talk about this in a public setting prior to having someone like oprah ask me to come forward. it is risky doing this here, i like it here, and if i was ridiculed in a place like this, i surely dont think i could continue my steps in this direction.

i will tell you the disease, but, in doing this i have to have you understand a few things. this is the internet.... you all can do a search for yourselves and find all kinds of photos of this, and im sure that a few of you will. there are some very graphic photos out there, ones that scare me as well.... my disease is not to that degree, and im hoping that it never makes it that far. dont get me wrong, its bad, pretty damn bad, but some folks out there have had their bodies completely disfigured from this.... i am not there yet.

the disease is called Hidradenitis Suppurativa. it is a skin disease that forms in any places of the body where there is skin to skin contact and is formed in areas that contain certain sweat glands. it is characterized by infections setting in the area, resulting in boils that can grow the size of baseballs. they are painful - sometimes beyond words and require surgery to relieve the pain and pressure. pain medication is taken around the clock many days. the body becomes resistant to antibiotics that are given to the patient, therefore they begin giving you 2-3 antibiotics at once. this scares me as we know that you need antibiotics for all different types of issues that can occur, and i dont want to keep knocking out options that i may need in the future for other health issues.

not to mention how it makes you feel about yourself. the disease is not pretty and it has taken a toll on my emotions, leading to a nasty case of depression. some days i just dont understand any of this and i get rather down about it. being in pain as often as folks with this are, depression is one of the things that follows this disease.

there is little to no research being done on this particular disease at this time.... giving sufferers not a lot of answers. it is estimated that 1-2% of the population suffer with this condition, but because people dont want to come forward, that number could be as high as 12%. hell, i may find folks here that deal with the same condition. awareness is the cure, i just know it is....

anyway, so, this is my story. i hope you understand why it is difficult to share, and i hope you understand why i need to help find some kind of answers....thank you for allowing me to 'come out' here

Im so glad you feel you can share that with us, and I hope we can give you what you need. It must be awful to have to deal with something noone knows much about. I honestly hope you can find the answers you need. We're all behind you

You are brave.
I'm sorry you are suffering with this...I'm going to look at the hospitals in the Detroit area to see if there are any docs who specialize in this condition.
Do you know of any support groups in your area? It might help to talk with folks who are going through what you're experiencing.


What else can we all do to help?

if there is anything, anything i can do for you let me know. i think i live the closest to you, so seriously, if there is anything i can do.


and if anyone ridicules you on this site i'll kick their ass!!

Geeez naked

If ya need anything or if I can help in any way


Is there anyway to start up your own support group? Or at least to start something going on this disease, such as some sort of awareness?

Here is a link to a really good Web site...I'm sure this is not new to you, but I think it would help...


http://www.hidradenitissuppurativa.net/

Yes awareness is the cure. I've heard of it before,but it's not talked about often.

There has to be someone out there that can help.
Dont be afraid,we're here for you

http://www.frontiernet.ne...Treat.html

a small start ( you may have already checked it out )



i am going to ask around to my healer frinds






.
[Edited 1/23/06 7:55am]

i am literally sitting here in tears....

you guys have made this so much easier than i ever thought it would be, i cant tell you how much the support and kind words (not to mention the immediate flow of wonderful org notes) means to me


thank you guys again...

nakedpianoplayer said:

Dont cry Naked! We're all here for you and we are all genuine people. Most of us have met and made friends on this site, and most of us send more time here than anywhere else. We're all a family

Take care xxxx

susannah said:

you are so kind thank you so much

my tears are tears of relief, they really are, i was unsure how this would go.

nakedpianoplayer said:

I understand, I would be terrified. It was very brave of you to tell us all this. You obviously have the strength to push forward

nakedpianoplayer said:

i understand. there are a few jerkoffs on this site that can ruin it. but as susannah said, we are all sincere.

and my offer still stands. if anyone ridicules you i'll kick their ass!

s nakkie

I admire you for coming forward and trying to DO SOMETHING about this rather than sitting back with an "oh poor me" attitude. Anything I can do to help, you know I'm here. Tell me where to send the letters. If you do come up to the Mayo, let me know and I'll do my darndest to come down and see you

It absolutely breaks my heart to hear that a friend is hurting. I'm always here for you, just ask

more s

I'm sorry to hear about this. Writing to Oprah sounds like a really good idea. Maybe if we posted all the contact information on this thread to make it easy for everyone to email her? What address did you send your letter to?

nakedpianoplayer said:

Ok and now comes the trying part.... We are all going to send you useless links and information you have long had.... but somewhere in something there just may be a Jaccobs ladder....

You did the right thing .... to be known is so important. Sure you have run the risk of a hurtful mocker here and there but so what? Mockers are a part of life....I mean its relative.... You took the best step by over comming fear and being known. Much respect to you lady...

I have a few Doctor friends I can run this by over the next few weeks....

Stay strong.....
[Edited 1/23/06 8:41am]

Tom said:

i will dig up the address somehow.. i had to join her site to be able to email her, but i will surely find some kind of way to get the address if you all would try to help out in that way

its good to hear that someone agrees with me about writing to her... i thought that idea might have sounded kinda silly, but like i said, she can get a lot of things done !


thank you all again so much for your support it means so much

Much respect to you Naked and you have our support!

Let's see what we can do to help you. I will start asking around in my area for you. Hang in there sweet lady

You're one strong woman, Nakie!

oh my sweetie..

I love the inner strength you have to do this, and I know you are loved on here so we all will give you the love and help you need or want. You have helped me sooo much in the past with my problems, I am sorry to hear you are having this problem now.

You are beautiful both inside and out.. well kinda gorgeous, I am a bit jealous but keep that pure strength you have.. it will carry you over mountains.

nakedpianoplayer said:

I don't know you, but I am sorry to hear of your trouble. I'll be happy to keep you in my prayers and to contact Oprah show on your behalf.



Love,
B.

again, thank you all so much your response has been incredible and the orgnotes with well wishings and web sites for support and information has been incredible... i adore you all, and i thank you again, you have touched me so deeply today - i cant tell you how this has made me feel

sweetness

We have known each other for quite a while and this is the first time I've heard you speak of it. Which indicates the personal nature of what you are dealing with. to you for coming forward to make a difference I'm sorry you are dealing with this and I will do whatever I can to help you through.

....Oprah?

I'll definitely keep you in my prayers, Naked. And I do admire your strength.

All my Luv and prayers NPP

You have my support always and you know this....I am so proud of your strength and admire you for comeing out with all of this...

You are a beautiful soul and a very lovely lady

shine and brite 's always...

You are in my prayers...

It's very strong of you to tell us all this and I believe as well it may be a first step in finding a solution. You'll have to be brave (as you already were) in order to find the best way to make this situation better, so I wish you all the luck !!

Trying to go to the media is good idea, I think, but you'll have to be strong and prepared: things that are not so nice may occur, but the most important thing is you'll find support and important information.