Hope for rare illnesses announced

The government has just announced $65 million for clinical trials, which will help people with rare illnesses.

It means that there is hope for better treatment for the millions of Australians who are currently living with these diseases.

In this article, we’re going to take a look at what this news means, living with a rare illness and what people affected can do to feel empowered.

What’s the news for rare illnesses?

Last month, the government announced that $65 million was to be made available for clinical trials that look at rare illnesses.

Funding will come from the Medical Research Future Fund (MRFF), which supports research into health and medical issues.

Individual grants of up to $4,000,000 will be released to fund research into four different areas of clinical trials, one of which is treatment for rare cancers or other diseases.

This is great news for people living with a rare illness as it means that new treatments could be discovered to help enhance their quality of life or even find cures.

What’s the definition of a rare illness?

In Australia, a rare illness is one that affects fewer than 5 in 10,000 people. These diseases are life-threatening or cause chronic symptoms over a long period of time.

There are around 7,000 rare diseases, and 8% of Australians — that’s 2 million people — are living with one.

The majority — around 80% — are genetic, and unfortunately, most rare diseases have no cure.

As we’ve seen, the term “rare illness” covers many different conditions. These include diseases such as:

• Cancers that occur during childhood
• Cystic fibrosis, a disease affecting the lungs and digestive system
• Huntington’s disease, which affects the nervous system
• Haemophilia, a bleeding disorder where the blood does not clot properly
• Muscular dystrophy, which causes progressive weakness and loss of muscle
• Cushing’s syndrome, when your body produces too much of the hormone cortisol, causing weight gain and a higher risk of serious conditions like heart attack and stroke

How to live well with a rare illness

If you or someone you know is living with a rare illness, there are ways to make everyday life more manageable. Here are some simple suggestions to incorporate into your regular routine:

Focus on wellness and self-care

Wellness and self-care are all about looking after your overall physical and emotional health.

You can do this by incorporating small acts into your everyday routine. Examples include:

• Swapping sugary snacks for fruit
• Using an attractive water bottle to help you drink more
• Starting a gentle exercise regime
• Using breathing techniques when you feel anxious
• Keeping a journal to record your thoughts and feelings
• Spending time in nature

By making time to care for yourself, you should find that small changes in your general health and mood build up to a more enjoyable day-to-day life.

Keep your medical appointments

It’s important to keep on track with your medical appointments when you’re living with a rare disease.

Your doctor or nurse will be able to check whether you’re on the right dose of medication and inform you about any new treatments available.

You’ll also have the opportunity to discuss any new symptoms or concerns with your healthcare professional.

Seek out information on your condition

Knowledge is power, so seek out all the information you can on your condition.

There are lots of ways to do this. You might enjoy reading about new research or swapping ideas with others in a support group.

The more you know about your condition and how to manage it, the more empowered and in control of your everyday life you will feel.

Spread the word to others

When you are living with a rare disease, you probably find that you have to frequently explain what it is and what it means to others.

Why not see this as a positive and use it as a chance to spread the word about your illness to the wider community? This will feel like a proactive step that helps you feel more in control.

There are lots of ways to do this. You may wish to take part in Rare Disease Day, celebrated in February every year, which offers lots of opportunities for activities and events.

Or you could give talks to your local community — for example, at your nearest school or college.

You could also wear a medical ID that gives information about your condition. This can be an “ice breaker” and help you start a conversation about what your illness is all about.

Wearing a medical alert wristband or necklace also means that if you are ever in an emergency situation, medical staff will know that you are living with a rare illness, even if you can’t communicate, and can give you appropriate care.

Feel in control of your rare condition

The prospect of new research into rare diseases gives hope to millions of Australians.

It’s good to know that new and better treatments are becoming available all the time. In the meantime, you can take simple steps to feel more in control of your rare condition.

Check out the Mediband range of medic alert IDs. Our bracelets, necklaces and med alerts are designed to help you take control of your life — and live it to the full.