scleroderma..please help!

  1. Does anyone out there know anything about scleroderma? I am only a nursing student and have researched it online but didn't find many definite answers. My best friends father has been sick for 3 years and he has been diagnosed with this disease. Unfortunately it took over 2 and years for him to be diagnosed. He is very sick right now and has been in and out of the hospitals for the past few months. Being new to the health care field I am not sure if this is how things work but her family cannot seem to get any answers from any of the doctors they have been seeing. Is there nothing to be done?! Even if that is the case, shouldn't the family and patient be told something about his condition and/or prognosis? This is a 54 year old man who previously was 6"2 and over 200 pounds and now weighs 145 pounds. I guess I just feel very frustrated for her and helpless b/c she lives far away and like I said I am only a lowly nursing student. If anyone has any information please let me know.
    •  
  2. 4 Comments

  3. by   JentheRN05
    Here's what I found doing a google on 'scleraderma disease process'

    general info
    Scleroderma: Summaries of Research

    Lung involvement
    Scleroderma Program: Lung Involvement

    Autoimmunedisease info on scleraderma
    PDGF Abs in Scleroderma: The autoimmune connection in systemic scleroderma

    What is
    Scleroderma Research Foundation

    Very informative site to look into
    Scleroderma

    Hope these help.
  4. by   live4today
    I lost a very dear friend to that disease when she was only 48. She left behind a dh and three wonderful children in their teens. She was also a nurse, and strongly encouraged me to finish nursing school. The disease wasn't easy to diagnose (in her case). She was thought to have Raynaud's Disease at first. I also read where the disease is more common among Puerto Ricans, and my friend was Puerto Rican. My heart goes out to anyone with that disease.
  5. by   Daytonite
    here are weblinks to information on scleroderma (systemic sclerosis). you should contact the scleroderma foundation for more specific information. they should also be able to provide a list of physicians who are specialists in dealing with this disease:

    http://www.nlm.nih.gov/medlineplus/e...cle/000429.htm - medline plus medical encyclopedia information on scleroderma

    http://www.healthfinder.gov/hg/files/?id=11575 - about scleroderma from the u.s. department of health & human services healthfinder guide to health information

    http://www.healthatoz.com/healthatoz...cleroderma.jsp - information on scleroderma, definition, description, causes/symptoms, diagnosis, treatment, prognosis, resources and organizations from the health a to z encyclopedia

    http://www.intelihealth.com/ih/ihtih?d=dmthealthaz&c=201933&p=~br,ihw|~st,24479|~ r,wsihw000|~b,*| - information on scleroderma for the consumer from intelihealth

    http://www.scleroderma.org/ - scleroderma foundation

    http://www.emedicine.com/med/topic2076.htm - "scleroderma" from emedicine
    http://www.emedicine.com/derm/topic677.htm - "systemic sclerosis" from emedicine

    http://www.medicinenet.com/scleroderma/index.htm - about scleroderma from medicinenet
    and http://www.medicinenet.com/script/ma...ticletype=news

    http://www.medicinenet.com/script/ma...ticlekey=19105 - " dr. shiel gives perspectives of interest on scleroderma from 2001 annual scientific meeting of the american college of rheumatology"
  6. by   AuntieRN
    I had to do a presentation on this in school. It is very hard to diagnose as it mimics other dieseases and has many of the same symptoms....it basically means hardening of the skin. It effects all organs in the body as they are essentially skin. I am sorry for your friends father. I know it can be very painful. (I am trying to remember what else as it was over a year ago I did the presentation.) The websites posted are some of the very ones I used.

close