For Family and Friends

If your loved one / friend was just diagnosed with cancer, while you might not know how to best help her or him, you at least have a very good idea of what s/he is dealing with.  If someone has heart disease, you also have a pretty good idea of what is going on.  However, when you hear that someone has a rare autoimmune disease like Lupus or Scleroderma, you probably have no idea what these diseases are like and how they affect your loved one.

All autoimmune diseases have one thing in common – they occur when the body’s immune system mistakenly attacks and destroys healthy body tissue.  There are actually many different types of autoimmune diseases, with Rheumatoid Arthritis being the most common one.  Patients with autoimmune diseases should ultimately end up under the primary care of a rheumatologist – a doctor who specializes in autoimmune diseases.  However, with a disease like Scleroderma that can affect almost every body organ, it is likely that the patient will be seeing many different doctors to help treat their symptoms.

Scleroderma is a rare chronic disease, but it also a disease that has tremendous variability in how it affects individuals.  Some patients experience rapidly progression of symptoms that can be life threatening when the patient is first diagnosed.  Many other patients have a much slower rate of progression, and while they may be dealing with an increasing number of problems over time, they may well live a normal lifespan.

Another important thing to realize about Scleroderma, in particular, is that it is often a very difficult disease to diagnose, especially when the patient has symptoms that can occur with a number of different autoimmune diseases.  It can literally take years for some patients to finally receive a correct diagnosis.  This is often a very frustrating time period for many patients and their families, and many patients actually feel some relief when they finally have a correct diagnosis.

While Scleroderma eventually causes some visible symptoms in the majority of patients over time, the reality is that since almost every organ in the body can be affected, patients may experience symptoms such as severe muscle and other pain, debilitating fatigue, chronic chilling, etc., that may not be visible.  These symptoms are real and common and it is important that you understand this.  The best thing you can do for your friend or loved one is to be supportive, read documents such as this one to give you at least a basic idea of what s/he is dealing with, and let her/him tell you what you can do to help them through this difficult journey.

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