THE MULTIPLE SCLEROSIS SOCIETY OF WESTERN AUSTRALIA (INC.)

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MS affects not only the person diagnosed, but also their family and friends.

Each family is unique and each person's MS experience is different; there is no right or wrong way to talk about it, and no ideal time.

Whether you should tell your children you have MS, and when and how to do it, is a common dilemma for parents. How much information you give them will depend on their ages and how you feel they might react.

Not wanting to distress or worry them unnecessarily is a common reason for not saying anything. It is a very personal decision; but kids can often sense something is wrong and may pick up on “what is not being said”, causing them unnecessary anxiety.

It is often helpful to start with small amounts of information and gradually build up. Regardless of the ages of your kids, the book “Talking with your kids about MS” is a parent’s guide on how to raise the subject, some things kids may want to know and other parents' experiences.

For younger children, it may be best to just answer their questions as they come up. Kids can often worry their parent will die; reassurance this isn't the case can relieve a great deal of anxiety.

The UK MS Trust book “The kids' guide to MS” is written for kids under 10; providing information about MS for kids and providing them with an opportunity to talk about MS and raise their concerns.

MSWA staff, nurses and counsellors, would be happy to chat with you about your concerns and they have several age appropriate resources available for loan, and you can also see our articles and links section; to help you start the conversation. Speaking to a Peer Support Volunteer, who has been through a similar experience, can also be a great help. Ring 9365 4888 or contact us.

Kids with MS

Whilst the majority of people diagnosed with MS are aged between 20 and 50 years; there is an increasing number of children being diagnosed with early onset MS with most aged between 10 and 16. Globally this amounts to only a small percentage of all cases diagnosed; a trend being seen in other autoimmune diseases such as Type 1 diabetes and Crohn’s disease.

In the under 10 age group the incidence is higher in boys, but over the age of 10 girls are more frequently affected, as with adults.

There are several web sites that have information, for example MS Society - In Touch

The symptoms in children are very similar to those experienced by adults, and vary from case to case, including altered sensation, fatigue, pain, dizziness, visual problems, and problems relating to memory and or thinking processes. Whilst the physical impact may be significant the impact on cognition can pose real problems relating to learning. The affect on the parents and siblings and extended family also add to the impact felt; MSWA can provide support through the nursing team and counsellors.

Fortunately the current treatments used for adults are also effective for children, and the same holistic approach can benefit the child and their family as they adjust to the diagnosis and effectively manage the challenges that may present.

For teenagers diagnosed with MS there are the additional pressures of wanting to fit in with their peers, puberty, resistance to continue treatment and a potential to develop emotional changes including depression.

The MSWA Hospital Liaison Nurses can visit Princess Margaret Hospital and follow up once discharged and we are there to support the family as they come to terms with having their child / sibling diagnosed. Our counsellors are able to provide invaluable support, for the parents and the child/young adult, and offer advice and strategies that can make a difference.

Don’t hesitate to ring 9365 4888 to speak with a health team staff member for more information or contact us.