SCLERO.ORG
Search
Patient & Caregiver Stories Main Menu

(English) 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

By Language: French   German   Greek   Italian   Polish   Romanian   Russian   Spanish   Turkish

By Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms

Mariam: CREST

I am twenty-eight years old but I feel drained all the time.

Iris by Ione Bridgman, ISN ArtistIt all started when I was twenty-one years old and I developed Raynaud's phenomenon. This condition became progressively worse and I now wake up in pain every day due to ulcers on my fingers and knuckles.

A couple of years ago, I was referred by my general practitioner (GP) to a rheumatologist who took tests and diagnosed me with CREST but failed to inform of this. When I rang the hospital they advised me that if I hadn't heard anything about the test results than everything should be fine. However, after a visit to my GP about another issue, she looked up my records and informed me of the diagnosis. I saw the rheumatologist last week, who has booked me in for a heart scan and other investigations.

I am feeling very low at the moment as after seven years of dealing with all the changes, and trying to carry on as normal, I feel like I have lost. I rarely go out. I find it difficult to carry out daily tasks and my face looks weird.

I am twenty-eight years old but I feel drained all the time.

My husband says he will support me but I feel like he gets annoyed and frustrated by my condition as he can't do anything to help me. I have two kids and that's all that keeps me going.

I don't think I am coping very well.

To Contact the Author

Mariam
Email: [email protected]
Story edited 12/04/08 JTD
Story posted 01/15/09 SLE

Story Artist: Ione Bridgman
Story Editor: Judith Thompson Devlin
LINKS
Emotional Adjustment
CREST Syndrome
CREST Stories
Raynaud's
Raynaud's Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Sclero Forums
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?

ISN Artist: Ione Bridgman

Ione BridgmanISN Artist Ione Bridgman created original artwork to illustrate this page. She is 90 years old, and lives in New Zealand. Her lovely paintings illustrate many of our pages and the covers of our Voices of Scleroderma Book Series .

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith 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!

Go to Marian: Watermelon Stomach
 
United Way of Central New Mexico
United Way of Snohomish County
See ISN News for recent donors, including memorials for
Frances Maude Baldwin Watson, Rubye Mai Blocker Westmoreland.
Thanks to Tamika Forteau and Paul and Margaret Phifer for raising scleroderma awareness!
Donate or Shop Now
 

TOLL FREE HOTLINE, U.S. and Canada: 1-800-564-7099
Ask for our Free Info Packet by email or postal mail!

SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to:

International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email [email protected] to request our Welcome email, or to report bad links or to update this page content. Privacy Policy.
 

The most important thing in the world to know about scleroderma is sclero.org!

Donate Now
Copyright 1998-2017, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.