SCLERO.ORG is retiring 4-24-2021. Thank you for the memories! You'll still find us in the Wayback Machine, and we'll carry your stories in our hearts forever.
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

Daphne M: Daughter of Limited Systemic Scleroderma Patient

She was admitted to CCU last week with difficulty swallowing and breathing.

Pink Roses Swirl by Shelley EnszMy mom was diagnosed many years ago with CREST (Limited Systemic Sclerosis).

We have watched as she has fought this. She has had symptoms of reflux, which has caused her to throw up every night for over ten years. Her hands turn blue and are very sensitive to hot and cold. She has been developing ulcers on her fingers too.

She was admitted to CCU last week with difficulty swallowing and breathing. They ruled out any issues with the heart, thankfully. She was sent home and told to see her rheumatologist immediately. I know that there are problems with the lungs with this disease and I feel that she needs to see a pulmonary specialist as well.

Her weight has gone from 175 lbs to 130 lbs in the last few years. My fear is that we are wasting valuable time in getting her the help she needs. If anyone knows more information, I would greatly appreciate it. This is a horrible disease and I feel so bad that I can't do anything to help her.

She is an amazing person and even if she feels bad she still manages to not show it. Her faith has kept her through all of the ups and downs this disease causes. We would like to keep her with us for many years to come, but we do not want to ignore her situation and how serious it is. I only wish that we knew how fast this disease can take her from us.

If you have any information or if you have struggled with this disease please let me know. I would love to be able to give her some promising news.

To Contact the Author

Email: [email protected]
Story posted 11-19-10 SLE

Story Artist: Shelley Ensz
Caregiver Stories
Esophageal Dysmotility
Esophageal Dysmotility Stories
Digital Ulcers
Digital Ulcer Stories
Heartburn (Reflux)
Heartburn (Reflux) Stories
Interstitial Lung Disease
Limited Scleroderma
Limited Scleroderma Stories
Raynaud's Stories

Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Sclero Forums *Online Support Group!*
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?
Go to Darlene: Diffuse Scleroderma

SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses. We are a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team. Donations may also be mailed to:

International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email [email protected]. Disclaimer. Privacy Policy.