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This website has been created for our daughter Natasha Aroha Legge-Murray. She is our eldest child born in December 1995.

In New Zealand, Juvenile Dermatomyositis or JDMS is very rare, as in anywhere else in the world. When Natasha was diagnosed she was the 13th person to contract it in this country. It's rarity therefore made finding any information on it within NZ quite hard. As time progressed, we were alerted of other children becoming affected and in some cases made contact with those parents who were only coming to grips with what was happening to their child.

One of the things JDMS does is basically her Immune System decided not to "turn itself off" after encountering and eradicating an invading germ. Everyone's immune system kicks in when an invading germ is detected, this is normal. But when the invading germs were destroyed by Natasha's immune system, her immune system remained active and eager to continue working. Since her original invading germs were now destroyed, the immune system had nothing left to detroy so it turned it's attention to Natasha's own healthy muscles. In effect, her own immune system turned against her own body and slowly tried to destroy her muscles.

The result was a devasting loss of strength. A feeling described by Natasha's previous Phsiotherapist as someone who has trained for hours in the gym to near the point of exhaustion, this was the normal feeling Natasha was experiencing day in day out.

No one really knows what causes JDMS. The following is an extract that tries to explain JDMS. The article was edited by a school teacher personally affected by Dermatomyositis. I think it does a good job explaining it in more detail than above....

The full extract can be found here

1. What is dermatomyositis?

Classical dermatomyositis is an autoimmune disease that commonly causes a characteristic skin rash and muscle weakness. On rare occasions, other vital internal organs such as the lungs, heart, bowels, and eyes can also be damaged. Involvement of some internal organs such as the bowels and eyes is seen more commonly in children with dermatomyositis compared to adults with this disease. In addition, certain internal complications such as calcium deposits in damaged tissue (i.e., calcification) are seen more commonly in childhood-onset dermatomyositis. However, adults with classical dermatomyositis have a relatively greater risk of developing internal cancers in associaton with their dermatomyositis.

The rash of dermatomyositis has a unique appearance and distribution over the body. The muscle weakness is most prominent in the shoulders, hips, neck and stomach, but muscles all over the body can be affected and become weakened. For example, the muscles used for swallowing food can be affected by dermatomyositis resulting in a choking sensation when one attempts to swallow solid foods or liquids. Some patients initially develop the skin rash but can go for 20 years or longer without experiencing muscle weakness (i.e., clinically-amyopathic dermatomyositis).

2. How is the diagnosis of dermatomyositis made?

When the skin rash of dermatomyositis has fully developed, it can be diagnosed by its appearance alone. A small skin biopsy can be carried out to confirm the diagnosis (the skin biopsy can narrow the possibilities down to dermatomyositis versus lupus skin disease -- the clinical appearance of fully-blossomed dermatomyositis skin disease is quite different than that of lupus.). A number of other conditions can cause muscle weakness. Therefore, diagnosing dermatomyositis as the cause of muscle weakness can be much more challenging. One or a combination of the following tests can be required to confirm the diagnosis of dermatomyositis as the cause of muscle weakness: blood tests (muscle enzymes, autoantibodies), tests of muscle electrical activity (electromyogram), special x-ray imaging of muscles (MRI, muscle spectroscopy), sound wave testing of muscles (ultrasonography), and muscle biopsy.

3. What causes dermatomyositis?

The Brief answer to this question is that we do not know. However, scientists feel that a set of predisposing genes inherited from one's parents is likely to be required. When exposed to certain virus infections, sunlight, or chemicals, individuals who are genetically predisposed tend to develop autoimmune reactions that damage the skin and muscle tissue (and sometimes other organs) such as the lungs in a characteristic manner.

4. What is known about clinically-amyopathic dermatomyositis?

Unfortunately, very little is known since no formal research studies have been carried out to date on this form of dermatomyositis. Our current understanding of this type of dermatomyositis results mostly from a series of medical case reports only. This form of dermatomyositis can occur in both adults and children. Muscle weakness develops very slowly in some patients only after a number of years. However some clinically-amyopathic dermatomyositis patients have been observed to go 20 years and longer without any evidence of muscle weakness. A small number of clinically-amyopathic dermatomyositis patients have developed severe lung disease even to the point of death. Whether this form of dermatomyositis has a true increased risk of internal cancer development is not yet known.

We decided after a couple of years to create a website for New Zealand parents of children with Juvenile Dermatomyositis.

This website chronicles Natasha's progress from pre-diagnosis time to now with pictures showing the dramatic change in Natasha's appearance.

The Contact / Support page shows links to other sources of information regarding JDMS
 

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