I hope you take the time out to read this.
My name is Valerie. I'm 19 and from The Bahamas.
I have always been pretty private with my I have always been pretty private with my personal life and struggle and I've always had slight social anxiety. So please bare with me.
Growing up in my hometown, I had big dreams and aspired to move to America to follow my dream of being a singer. I have been writing songs and singing since I was 7 years old and it has always been a passion of mine. As I got older, I started to get into makeup artistry, photography and graphic design, so the four are basically my life.
Now to get to the point of this whole fundraising effort....
It all started when I was about 13 and I found a lump in my left breast. I was afraid and I let my mom know and we went to the doctor and later found out it was a cyst.
It wasn't serious, it went away on its own so I was relieved.
Then during the ages 14-15, I realized I started to sweat ALOT and as a teenager trying to grow up and deal with everyday challenges and making friends, it was really hard and I walked around in school in a jacket to hide the stains, no matter the weather, I was always the jacket girl. I was embarrassed.
I thought my body was just different from everyone else and boy was I right.
When I turned 16, was when I first discovered I had a lump/bump/boil on my right underarm. At first, I thought maybe someone had used my deodorant or I was allergic to it. I went to the doctor and he told me it could possibly be because of shaving with a dirty razor and many other reasons (practically blaming me for what was happening). It was there for a week, then it ruptured and there was puss everywhere (sorry it grosses you out), I was so scared but also relieved because the boil hurt every time I tried moving my arms.
When the boil burst, it left a hole/ulcer/wound at the site of the boil and a year went by and it hadn't healed. I didn't pay it much attention because it wasn't big and no one could see it.
I was concerned about what other people would think, but I didn't know at the time that it would be the start of a nightmare.
Ever since that one time, it became a reoccurring thing guys.
After being tired of other doctors telling me it was something that I was doing wrong and blaming me, I decided I needed to see a person that knows skin... A DERMATOLOGIST!
At my first visit, I got my body examined and she left the room, my stomach was in knots, and when she came back, she said "there's good news and bad news.. Which one do you want to hear first?"
I looked at her with fear in my eyes because I thought it was fatal or leprosy, I was freaking out in my mind.
Basically, that's when she told me it was Hidradenitis Suppurativa (that name sounded like a whole other language to me, a name I have gotten so used to getting a confused face reaction from people when I tell them)
The good news was that it wasn't contagious, but the bad news was that there's NO CURE.
Only certain treatment methods that may or may not work for me.
I spent months as my doctor's guinea pig basically, and nothing worked. The ointments, the pills, the suggestion of losing weight ... Nothing worked.
At that point, I was just tired of it all. The medication had side effects and I was sick most of the time, then on top of that I was being told I had to lose weight? Certainly WASN'T a confidence boost for my decreasing self esteem.
As time went on it only got worse,
It went from being on my underarms, to tricep area, to my right breast to my inner thighs *sighs*
I went the rest of my teenage life pretty much feeling depressed and wondering why it was happening to me and no other family members had it. Researching it, I found out it was supposedly hereditary. I felt targeted and hopeless. I cried every night.
I felt so ashamed of my body and I wore clothes that hid my bandages. I was in pain almost daily and I was popping ibuprofen like candy, yet no one would assume so because I always kept a smile on and did my makeup to hide my sorrow inside.
I found myself caught up in the social networking phenomenon and not wanting to go outside and meet people the normal way or live life as normal. I was afraid of getting rejected in relationships and never getting married and all types of thoughts floated in my mind and still do.
When I turned 18, I started to really dig deep and search online for cures, treatments, natural remedies and everything I could think of.
I was sick of being SICK!
I came across many good ideas that helped with the pain, but along the way while on their search, I came across message boards and groups filled with people that have H.S. (PEOPLE LIKE ME)
I read their stories and day by day it broke my heart. I hate this diseases. It ruins lives and makes people miserable. It's debilitating and i discovered the depression and suicide rate is through the roof!
Why doesn't the average person know about this? Why should we have to suffer in silence and embarrassment? A CURE NEEDS TO BE FOUND!
First off, this condition is so misunderstood in my opinion. Most doctors either haven't heard of it, or have an incorrect idea of why it happens.
I was tired of being in pain, not being able to go places or take baths without wanting to cry because of the soap burning my ulcers.
I'm no doctor but i know what works for me, Through my research I discovered that salt water (though it burns) helps to dry up the wounds which makes them heal quicker, Manuka honey is great for healing too. But what made the biggest difference was a change in diet, I went COMPLETELY GLUTEN FREE!
It's hard not being able to eat certain foods I grew up on and love but it has been worth it. Just eating chicken, fish, fruits and veggies , nothing else unless it states that it's gluten free.
Even though this lifestyle change helped, it wasn't a cure and I would still have breakouts and be in pain at times.
I strongly believe that H.S. has to do with gluten intolerance though and I recommend the gluten free lifestyle.
I think that's enough backstory for you guys, I don't want to give you TOO MUCH to read but if you guys want more info about the disease please look it up.
Everyone, please understand that I am on a mission.
That mission is to RAISE AWARENESS!
That mission is to get this in the public eye and to more doctors and to eventually find a real CURE!
My reason for making this site is to raise money for my medical bills and skin grafting surgery to remove the affected skin and lessen the chance of it coming back or spreading.
I make money taking photos but I haven't been feeling well to continue on and I don't feel I can maintain a regular job because I wouldn't be a reliable employee with such a painful and unpredictable situation.
My father has been providing money for me to pay my medical bills all my life thus far but I can't depend on him forever.
I never thought this would be happening to me and I certainly never thought I would be opening up about this all to the world.
I'm not asking for much, but I would be forever grateful for donations.
Anything would help.
Please don't be afraid to contact me if you have any questions or concerns.
Here's the link to click to donate:
It would really help if you spread the word as well.
And yes I am a real person, I know there are some scheming people out there but please trust that my story is authentic.
Thanks so much for reading.
Edited by KamilleMcQueen - Sep 26 2013 at 10:31pm