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.
Email: [email protected]
Story posted 11-19-10 SLE
Story Artist: Shelley Ensz
Esophageal Dysmotility Stories
Digital Ulcer Stories
Heartburn (Reflux) Stories
Interstitial Lung Disease
Limited Scleroderma Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Sclero Forums *Online Support Group!*
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?
United Way of Central New Mexico
United Way of Snohomish County
See ISN News for recent donors, including Juliet Youkhana; and donations in loving memory of Jim Miller and Arlene Marie Petulla.
Click Here to Donate or Shop
or click on the floating green DONATE sclero.org button.
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: