Scleroderma and the Ordinary Girl — Kim Tocker

Living with a chronic disease such as systemic scleroderma brings huge changes, and my life is different from what it was like before diagnosis. These changes generally happen over time, matching the disease progression.

Systemic scleroderma is a nasty disease with many complications that make my life difficult. Because of scleroderma, I have to endure diagnostic procedures, pain relief management and am required to take many medications. People often…

Just the other day someone asked me about scleroderma. During our conversation I explained that I needed to have esophageal dilations regularly so I can swallow food without choking. After hearing about this procedure, the person commented…

A very unusual event happened this week that prompted me to think hard about my role as a patient when I am being looked after by my main caregiver, my husband Max. Despite hardly ever…

Disabled people are a minority group, as are those with rare diseases such as scleroderma. Just lately, I have read many anecdotal stories of people just like me being singled…

A short time ago, I saw a foot specialist who, by all accounts, was well-versed in all aspects of podiatry pertaining to rheumatoid issues, and also had a particular interest in scleroderma. As my feet had…

There have been times when my spirit just feels broken by scleroderma. It is hard to feel grounded when I am tired, in pain, and feel unwell and frightened about my future. Scleroderma’s presence…

When I was in my 20s I was one of the very first people go bungee jumping here in New Zealand, when AJ Hackett operated from a tiny caravan set up by the Kawarau Bridge…

Until writing this particular column, there had been an aspect of scleroderma that I still had not managed to come to any place of peace with since my diagnosis five years ago. It…

In the hospital last year after major surgery, I was unable to do much without assistance from my nurse. As a scleroderma patient who suffers from Raynaud’s disease, it is imperative that I keep warm,…

Naturally, I am in contact with many people who have scleroderma, because I also have systemic scleroderma. I connect with other patients either through social media networks online or in person. Some scleroderma patients are…

As a scleroderma patient, I have a trusted team of medical experts who work with me to help keep me as well as possible, and prescription exercise is part of their treatment plan.