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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
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