Plz Read This Thread!! Allisonsullivan And Sammy8 Especially!!

[allisonsullivan]

There's a thread about emailing Oprah. If anyone would care, it would be her or Montel. And Montel's got MS to worry about, so Oprah's probably our best bet. There's a link to email her.

[Hope4thebest]

Cool. Has anyone e-mailed her yet? That may be our best bet!!!
I live in Canada and I'm not brave enough to go on Oprah.

[allisonsullivan]

Here's the link: http://www2.oprah.com/email/reach/email_showideas.jhtml
And yes, I've emailed her. I don't think she's going to have us all on, just flood her with letters, and then decline to go on if she contacts you about an appearance. I'd definitely go, she usually gives people those expensive treatments if she has you on! Plus, I think she's really cool!

[Hope4thebest]

You know what, that's a good idea!!!
Let's flood her w/ letters!!!!

[hopefoolcure]

Hi allisonsullivan

A mud crawl is one where u crawl in a pool of mud (i.e. in the military, that may be called an 'obstacle' course).

[hopefoolcure]

Hi allisonsullivan

I have signed this petition a few years ago and have signed again recently but only to find out that there are only 2,051 petitioners to date. How is it going to make it? This figure just doesn't justify or give a "heavy weight" to our call.


To All

Do you guys & gals think that it's a genetic disorder? I can't seems to find the website I have browsed few days back. It said something like...."it's only about 4 million plus people worldwide who suffers from this non-life threatening skin disease. Thus, it was not feasible (in monetary terms) to conduct an intensive research." What the......! Their suggestion was to seek a psychologist advice should you go into depression. So what's their motive? To give psychologist a chance to earn some of our money?

[hopefoolcure]

Hi my friends

Please take a few seconds whenever you log online by clicking all tabs in the link below everyday to help the not so fortunate.

http://www.thehungersite.com/cgi-bin...kyoupg_THSlogo

Thank you and may all be well, happy, peaceful and prosperous.

[allisonsullivan]

Originally Posted by hopefoolcure

Hi allisonsullivan

I have signed this petition a few years ago and have signed again recently but only to find out that there are only 2,051 petitioners to date. How is it going to make it? This figure just doesn't justify or give a "heavy weight" to our call.

If we can direct tons of people to this petition, we can beef up the numbers! Stay positive! Also, I think if we can flood Oprah with letters, maybe the 2000+ people will be enough to spark her interest! It's worth a shot!

HopeFoolCure, can you check out the research thread I just posted ("Research: Please read and answer honestly") and answer the 3 questions? I had you in mind when I thought of the 2nd question, and I'd like to see how you'd respond to the other 2. It's worth a shot, right?

[allisonsullivan]

Okay everyone, I just emailed Oprah again with the following letter:
Hi Oprah (and staff!)
I'm writing on behalf of some 2,000+ (on our forum) sufferers of a skin condition called Keratosis Pilaris. It affects approximatley 40-50% of the population, but most don't know what it is, or that they have it. What it is: the skin's inability to shed skin cells properly, causing tiny raised bumps on each hair follicule (sometimes referred to as gooseflesh). This is often accompanied by redness, blotchiness, white keratin plugs, and lots of frustration! Some people have it from head (even on the scalp) to toe, literally. These people often suffer deep depression and avoid going out in public. I'm a luckier KP sufferer in that I only have it on my upper arms and upper thighs (the 2 most common places), but there are many who also have it on their faces! Why I'm writing you: Recently on the KP forum (www.keratosispilaris.org) we decided that the only way to get universities, doctors, and drug companies to fund research on this condition and try to find a cure (or at least a treatment that works!) is to bring attention to it by writing you. Many countries look to the States for an answer, one fellow in Singapore wrote, "You guys over in the States could help gather more KP sufferers and launch a campaign to plead for foundations for aid." He told us he was "suffering in seclusion" So sad...
There is a petition online to try to get them to take us seriously, but to date only 2051 people have signed (like I said, many don't know what they have, as it is often confused with acne). We've been told by doctors, pediatricians, OB/GYN's and dermatologists to "get used to it" or "start wearing long sleeves", but that they don't have anything that will help us. One doctor told me, "You could try this, but it probably won't work, just give it 6 months to a year to see." !!It was expensive AND it burned!!! I've spent $1000's trying to rid myself of this condition (which I've only had since the birth of my daughter 4 yrs ago; some people have had it all their lives!) and would spend $1000's more if it meant we could find an affordable cure, or at least a successful treatment! Oprah, please help us draw attention to this condition and get companies on board with helping us. Don't they realize the number of people they could help?! 40-50% of the population in all countries around the world!!! Help us, please!
I'm posting this because I thought you might like something to copy and paste to Oprah that might get into the hands of a staffer with KP! If you don't agree with anything I've said, please feel free to write your own! I just thought this might be something we could C&P and send daily. Eventually, someone will have to take us seriously! Ooh, I almost forgot, you only get 2000 characters to use, that's why I was so brief. Okay everyone, get pasting!

[Khrissy3000]

KP has different forms, causes and treatments...i am going to look at the different causes, so that i am helping everyone...but for me to help you, i need details on anything and everything from what you eat to your height and weight...i care alot for people and i hate them been unhappy, so lets take over from useless dermatologists...and let us take credit for finding useful ways in conquering KP.
I mean everyone...write letters, sign petitions on NOT!! asking but telling dermatologists to get off there asses and do some work, it makes you sick the fact they get paid to do nothing...theres no cure for KP because no one has looked for one, now i don't know about you guys but KP has overstayed it's welcome on my body...and now it's time for it to leave, and no i am not all talk no action. Any questions or answers, feel free to post.

Genetic KP: KP is written in your DNA, therefore you cannot take it out...BUT!! you can take away all of the symptoms of KP, so the only thing that says you have it is your DNA.
KP In Adolescence: KP is hormonal therefore your skin is changing from girl/boy to woman/man, make sure you keep slim and take all the daily amount of vitamins and minerals...try not to mess your hormones up with stress, anxiety and junk food. If you get pregnant when your still young imagine what that will do to your hormones.
KP In Plump Or Obese: KP is caused by fatty tissue which is making it harder for many oils to get to the skin, therefore your skin will become dry or will lack essential oils, vitamins and minerals.

[Khrissy3000]

Allison i like the way you are, like me you want answers...this is the kind of attitude i want people to have, theres enough people on this board that could help...if everyone done an hours research a night on KP, each person a different part of it...am sure we will come across something, keep this up what you are doing. Great Work.

[allisonsullivan]

Khrissy, thanks for the support! Did you see my thread, "Research: Please read and answer honestly..."? I'm trying to get a sort of easy to quantify sorting system going. If we can divide people into main groups, then maybe we can find treatments that apply for each group!
BTW, is Newcastle-Upon-Tyne a British place, or a reference to the beer (mmm...Newcastle Nut Brown Ale...mmmm)?

[hopefoolcure]

Allisonsullivan
Question 1
Do you have KP like mine or is it different?

Ans: I would think that all individuals are unique. Remember, it could have similarities but it can never be the same.

Question 2
Do you think you have "contracted" KP, or is your genetic? - make sure you ask your relatives if they have EVER had it. They may not have even known it was KP....

Ans: I'm still analyzing it. Firstly, I am thinking that it could be attributed to that mud crawl during my puberty. Secondly, I have been tracing my family history back to my grand parents. On the second point, I found that my grand parents had no severe skin problems except some mild skin pigmentation issues (in particular my grand father) and as for my dad, his body skin conditions was near perfect but have gotten KP unknowingly when he entered into his mid-thirties.

Question 3
Where is your KP located?

Ans: Mine is on both my arms and a little on my legs.

Thanks Aillsonsullivan for sending that email / letter to Oprah (and staff). I pray that one day, our call will be heard and researchers will start to take serious views, actions and do something about it to help us out of this skin 'disaster'.

I am now trying out on some essential oils application and am not sure yet if it could help 'subdue' the bumps. Is there any supplement that you guys / gals could recommend to all? I found out lately that Neutrogena had stopped selling its Multi-Vitamin Acne Treatment lotion which was rather effective for KP. Why stop if it helps? Weird....



Khrissy3000
Let us all work hand-in-hand and let's keep every KP sufferers informed / updated on your work. Let us all walk the talk, yeah!

[Khrissy3000]

Yeah Newcastle-Upon-Tyne is a British place, and thats a good idea...i always thought that it was strange how people were responding to treatment differently to others, so i researched it and there are different forms and causes which MUST be all treated individually...also i believe my theory on those who have not got genetic KP to have left a door open for KP to walk right in.
I ran some tests on my friends, i had to pay them of course (that is how desperate i am) ...i had to pay them because what i asked them to do would change them for a while.