TV Video: Hannah - Health Insurance Story. View her fight for insurance coverage for the SCOT Trial, with David Becker, ISN Assistant News Guide.
Tackle Scleroderma! Join/Shop/Donate
SCLERO.ORG by the nonprofit International Scleroderma Network (ISN) is a full-service nonprofit charitable foundation providing stellar research, support, education and awareness
Search sclero.org:

Patient & Caregiver Stories Main Menu
(English) Stories by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z
All Stories by Date Posted: 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 ;2009
Stories by Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms
Stories by Language: French | German | Greek | Italian | Polish | Romanian | Russian | Spanish | Turkish
Chloe S.: Telangiectasia
They just kind of gave up and put me in the pile of unknown cases.

Cream Freesias by Sherrill Knaggs, ISN Artist Since I was about six months old I started getting this 'rash' starting from my ankles going up to the top of my neck. My mum and dad took me to my local doctor not knowing what it was. The doctors did not have a clue either so they sent me down to Sydney to see the doctors and specialist down there.

They did all the tests they thought were necessary and still could not figure out what it was. There were about seventy doctors coming in this small little room in small groups and to each of them mum and dad had to explain what had happened, but none of the doctors could work out what it was.

This one specialist took my case overseas to see if any of the doctors knew what was wrong with me but none of them could so they just kind of gave up and put me in the pile of unknown cases.

Now my doctor here in Kempsey told me about two years ago that it may be telangiectasia. I have gotten all the information off the Internet and that is what it sounds like. My 'rash' is just like telangiectasia. It is kind of like little red broken-up birthmarks all over my body.

When I am cold the back of my legs go blue and if I am really cold they go like a black color because the oxygen is not flowing through my body properly or something like that.

I still am just like everybody else. I do not have any mental problems or anything and I am very outgoing. I just have a rash and it does bother me. If I had to choose whether to have it or not I would choose not to.

About four days ago, we went down to Sydney. I had been begging mum and dad to take me down there so I can see about laser treatment. So we went to the doctor and she said that it may be on my brain and if it is that means that it could be either eating away my organs or making them turn hard like stone. She does not really think so because I do not have it on my face but I have it everywhere else.

So now in a couple of months I will have to be traveling down to Sydney quite a lot to get a MRI, see a lady about laser, and another doctor about my legs because one seems to be growing faster then the others, and I will need to see another doctor to take special photos.

I am fifteen years old and I am just sick of not being able to wear a skirt or short shorts downtown because I get teased. My mum has always said, "Don't worry about them because you are special and they are just jealous." But that is not it.

I still have a good fun personality and I am always up for a party and I have lots of great friends but I just want to be like everyone else. If I get laser I won't have to be different from everyone else.

I wish that people could just see it from my point of view and see that it is hard for us to have it, and to stop being so childish and teasing someone for something that isn't their fault.

I have never talked to anyone else with the same kind of condition as me and I would really like to. So please contact me on my email address so that we can discuss our problems together. Thank you.

To Contact the Author
Chloe
Email: nuffinreallymatters2me@hotmail.com
Story edited 03-17-06 JTD
Story posted 06-09-06 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
LINKS
Telangiectasia
ISN Artist: Sherrill Knaggs (In Loving Memory)
Sherrill Knaggs Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.
ISN Story Editor: Judith Thompson Devlin
Judith Rose ThompsonJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!
New Personal Stories
Maria T: Daughter of Deceased Scleroderma Patient (Italy) He, upon looking at my mom's face and hands diagnosed her with sclerodermia, in fact he took care of her until the end...
(Italiano) Maria T: Figlia di una Paziente Defunta di Sclerodemia (Italia) Lui, come vide a mia madre disse "tu hai la sclerodermia", guardandole le mani e la faccia...
(Update) Dee B: Limited Scleroderma/CREST Syndrome (South Africa) There is so much I want to add to my original letter after reading more of other peoples stories. I am certainly not getting better but wish I was...
Tessa: Morphea The nurse just told me that I have morphea and knew nothing about it and she told me to look online for information...
More New Stories: August-November 2009
Submit Your Patient, Caregiver or Survivor Story in:
Arabic  | Dutch  | English  | Español  | Deutsche (German)
Italiano  | Polski  | Russian  | Spanish  | Turkish  | Other Languages
We will edit your story, create original artwork to decorate it, prepare it for the web, and post it on this site. Just fill out our simple Story Submission Form for your story, updates, or email address changes.
 
Go to Chris Beck: In Memory of My Mother, Veta Breit
 
SCLERO.ORG is brought to you by the nonprofit International Scleroderma Network (ISN). The ISN is a full-service nonprofit scleroderma charitable foundation providing stellar research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension.
  1. Post a message in Sclero Forums!
  2. Email: isn@sclero.org
  3. English Email Form
  4. Español Email Form
  5. Italiano Email Form
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702
United States
Toll Free Hotline in U.S.
Hours: 9am-3pm CST only.
Please leave a complete message, in English.
1-800-564-7099
Direct Line
1-952-583-5735
We are also known as the Scleroderma from A to Z web site.
© Copyright 1998-2009 International Scleroderma Network
All Rights Reserved