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
Fykah: Systemic Lupus Erythematosus (SLE)
My heart is in serious condition, my lungs are swollen, so are my joints.

Deep Purple Water Lily by Sherrill Knaggs, ISN Artist I am Fykah, eighteen, and it is my birthday tomorrow. But I guess I already got my nineteenth birthday present: lupus.

I am recently diagnosed with lupus, yet some complications are still under-diagnosed. I've always had huge aspirations. Now, as my health deterioates at a weird rate, I can't walk around. My heart is in serious condition, my lungs are swollen, so are my joints. My voice is almost not there and here I am, thinking about my nineteenth birthday.

My face is swollen, as some gland in my neck has bloated and somehow I don't enjoy what I see in the mirror. I am very sensitive to sunlight and so I stay in for all day and when I decide to go out, it is after 8 or 9 p.m.

I almost feel drained by going down my stairs, and so I decide against it. It has been days since I walked out in the sun. I always loved sun; now I am forced to hate it.

I am despondent, yes. Because I see my dreams shattering, my family life is breaking apart and I am getting more useless EVERY single day. How long will I continue?

Maybe another thirty years...maybe not another day.

To Contact the Author
Fykah
Email: Withheld by Request
Story edited 04-30-07 JTD
Story posted 04-30-07 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
LINKS
Emotional Adjustment
Systemic Lupus Erythematosus (SLE)
Lupus Personal Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Sclero Forums
Symptoms of Scleroderma
Types of Scleroderma
What is Scleroderma?
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 Gail: Undifferentiated Connective Tissue Disease (UCTD)
 
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