Charity aims to raise awareness of skin condition many choose to keep secret

Published on Monday 26 January 2009 19:20

It will be the first of its kind for this group of conditions, and it is hoped that, through our fundraising efforts, we can begin to unravel the histology and provide answers.

ICR will be involved in a wide range of support and education services, and research for those who are affected by idiopathic calcinosis (also known as calcification in the skin). In addition, ICR will promote awareness information and provide support and advisory services to the public. The charity will also look at making the information on these disorders easier to access.

At present there is little available, and what is accessible is very complex and not user-friendly. It will be one of the charity's responsibilities to make this information easier to understand, while ensuring the public is educated with concise but important information.

Idiopathic calcinosis is a group of rare benign disorders that can affect anyone. It usually starts from 21 to 35 years of age, but can begin much earlier. The condition is normally characterised by calcified nodules in soft tissue within the skin.

It is thought that, as a result of trauma, abnormal mineral metabolism (inflammation) results in calcium being deposited in the soft tissue. The nodules may become progressively larger and can cause pain in some patients.

For some time it has been a controversial issue whether this is the cause of the disorder, and whether each case should be labelled as idiopathic in nature or secondary to a recognised underlying pathological disease, abnormality or trauma.

The histology of the condition is unclear and not much research has been undertaken. It is thought a very low percentage of the population is affected, but no statistics are available to give an exact account.

Although these disorders are not life-threatening, it does not mean they can't be detrimental to the person affected by them. They may suffer from low self-esteem and a lack of confidence, especially in a sexual relationship. Because some of these disorders affect intimate parts of our body, not many (particularly teenagers) feel comfortable talking about their problem and, instead, try to forget about it.

Because very little research has been undertaken and these conditions still remain a controversial issue, it will be the charity's main purpose to look at them in more detail. This will be done through fundraising to undertake appropriate research on the condition.

There are a lot of unclear theories relating to the problem, and it is necessary to conduct more studies so the cause of IC can be established and effective treatments found. The charity will, at first, concentrate on studying three important types of this disorder; idiopathic scrotal calcinosis, idiopathic vulva calcinosis and idiopathic cutis of the penis. As the charity progresses, we hope to expand and look at more types of this disorder.

There will be ten voluntary members on the management committee board taking on a variety of roles. As there will be no paid staff, the charity will rely on volunteers giving their time and support to make this a success. We are still looking for volunteers and welcome all applicants. We are in the process of having a website ready for the launch date of the charity. This will be found at Www.icresearch.synthasite.com.

There will be a host of information available on the site, as well as a forum for discussion.

Donations can be made through the website. As we will be receiving no funding from any other means, without the public's help we cannot make this a success.

&#149 Jay Sears is the founder of Idiopathic Calcinosis Research.