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How can I help my brother?

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My brother was diagnosed approx. 4 years ago with scleroderma. He has been going to see a rheumatologist regularly and has been in the care of one of the best centers for scleroderma in the country (so I am told). In the past year and half his heart and lungs have begun to be involved. He lives in pain daily. he used to be a heavy-set guy but was very athletic and now does not have the strength to hold a coffee cup with one hand. He has lost so much weight because he cannot eat (his gastric motility is almost nil).


He is trying to handle everything on his own. He has really isolated himself. I know that he is depressed (and entitled to be). I suggested to him that he see a therapist but he is not interested in adding another doctor to his list of appointments.


What can I do? What should I do? My family and I are at wits end.

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I am so sorry to read what your brother is going through both physically and emotionally. Those of us affected by scleroderma can relate to how hard this disease is on the patient, but a post like yours reminds us as to how hard it is on those that love us. I'm so glad that you have joined to forum for some help and support. We do have a large section on Emotional Adjustment that provides links to articles and studies on how to cope with this disease emotionally. One of our members Dee Dee Hunt has created a wonderful page for Caregivers. She recognizes your needs and emotions and provides suggestions on how you can cope with this.


I'm not a psychiatrist nor a doctor, but as you point out, it's easy to see that your brother is deeply depressed and needs help. It sounds like things are getting worse rather than better even though he is supposedly going to a well-known scleroderma center. Maybe it's just not a good match for him. Have the doctors recognized his depression? Sounds like they should have. It might be time to look around and find him another doctor. The mortality rate has dropped for this disease, but early and/or aggressive treatment may be required, especially for diffuse scleroderma. I feel if he were to see some physical improvements, he might start feeling better emotionally.


Please talk to him about his doctor visits. Go over the tests results, past and current. Be another set of eyes to make sure that progress is being made and that the doctors are doing everything they can to help him. Learn as much about this disease as you can so you can talk to him about it. He's probably too depressed to do his on research. We have lots and lots of information on this site so feel free to surf. I think it will help you both.


Please keep us informed on how you and your brother are doing. He is very lucky to have you.


Big Hugs to you both,

Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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I think he would feel better if he saw some physical improvement as well. His doctor's have mentioned therapy to him before but he doesn't want to pursue it. His illness is not presenting in a typical fashion. His doctors can't believe it. The test results come back that everything is normal. This is baffling to him and our family. How is it that the labs come back fine and his condition deteriorates? Thank you so much for responding to me. The situation is very desperate.

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Hi Brother,


It might take some persuading on your part, but I saw physical improvement after undergoing a pulmonary rehabilitation programme and specific physical therapy for other issues. As a side effect, just hauling myself to the appointments got me out of the house and helped motivate me to continue exercising and socializing.


Some scleroderma centers have psychiatrists/psychologists and many of them also have Occupational Therapists, Nutritionists, and so on, all of whom might be of use to your brother. As she also mentions, many of us have been made to doubt our own sanity in the course of getting a diagnosis.


There have been studies relating depression to autoimmune diseases and you can read some of the information here. Perhaps if your brother knew of this link, it might help him to accept seeing a therapist. We all too often tend to think we are being "wimps" if we "allow" ourselves to be depressed and for that reason don't seek help. Knowing that depression can be a part of the disease process and is treatable can help.


I wish both him and you all the best.

Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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