Surviving arthritis

‘I don’t wash the dishes at all. I can’t squeeze the dish cloth. It is very difficult. You see now how I am straining my joints trying to squeeze this cloth. My one thumb is dislocated. If I am dusting, I use this hand glove to dust my furniture. It’s much easier and painless’, says Matilda Nkosi as she demonstrates how difficult it is to carry out chores in her house.

Matilda lives in Klipspruit, Soweto, and she has rheumatoid arthritis. She was in her twenties when she was diagnosed.

‘My youngest son was three years old. I had to hire somebody to help me with the house-keeping, and she did everything. It hurts to be in such a state where you cannot do anything for yourself. Life was so difficult around that time. I could hardly bathe myself or do anything for my family’, says Nkosi.

Rheumatoid arthritis is an auto-immune disease, meaning the immune system which is supposed to protect the body, instead attacks the body’s tissues, particularly the joints, causing pain and inflammation. After a prolonged period on medication with her private doctor, Matilda picked up that she was deteriorating when she became weaker and was no longer able to work because she had no more strength left in her.

‘By the time I went to the clinic, I was so pale. I was told I am anaemic. I was told there is not enough blood and water in my body, meaning my doctor referred me when it was too late. When I got to the clinic they quickly took me to Bara Hospital. There was a time when I could not even walk. I would be pressed to use the toilet and convince myself that I could go on my own. I would not even reach half way and I would wet myself. This used to hurt me so much’, she says.

About three percent of the population have a systemic or inflammatory form of arthritis, which not only attacks the joints, but other organs in the body. Like any other chronic diseases, rheumatoid arthritis also has its risk factors, such as being over-weight and smoking. Rheumatologist and representative of the Arthritis Foundation of South Africa, Dr Anne Stanwix, says Matilda’s description of how her arthritis started eating away at her fits very well with the disease.

‘It affects both small and large joints – those in the hand and feet, hips, knees and shoulders.

It is three to four times common in women than men because women are more prone to getting auto immune conditions because of oestrogen being a promoter. People who get rheumatoid arthritis also have problems with fatigue because it is an inflammatory condition, so they complain about being tired, often losing weight, they may have these painful and swollen joints in the morning. About 50% of people who have rheumatoid arthritis will no longer be able to work five years after the onset of the disease. So, it plays a huge role in a person’s life in terms of work disability’, Dr Stanwick says.

She says compliance to treatment is very important to help manage the disease to avoid a relapse. Treatment non-compliance is one of the reasons why patients often have a relapse.

‘Sometimes patients who do quite well, then stop their medication, will have a relapse. Sometimes, it can be triggered by stress because stress is a great provoker of the immune system. When I talk about triggers in the environment, it is often physical or psychological stress. So, the patients will be at risk for relapses even if they are on medication’, she says.

Matilda can attest to this. She says when she started feeling better she had no desire to continue with her treatment. Little did she know the consequences that were to follow.

‘It was 2005 or 2006. I felt like I was cured. They call that stage remission. You feel so well because there is no more pain and you don’t feel like taking your medication anymore. And I did not inform my doctor when I decided to stop with my treatment. For a good three and a half years I was not on treatment. But, wow, did I did I get sick! It came back to attack me. I learnt my lesson the hard way. Since then, I take my treatment continuously’.

Dr Stanwix says exercise is vital to help with easing the pain and pressure on the joints. She adds that severe sufferers are also given some tools to help them with certain activities they can’t perform.

‘The Occupational Therapist comes in by asking the patient to perform certain tasks like opening bottles, lifting things…So; they see what they are struggling with and, then, offer suggestions in what they can use. In some countries, the OT will make a home visit and look at the house and see what the patient is having problems with and try find solutions for it. These assisting devices are very useful for people, especially as they get older – no matter what condition’, says Dr Stanwix.