What Should You Do If Diagnosed with a Rare Disease?

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A rare disease, as appalling as it sounds, is a phenomenon that is challenging to handle. If you or any of your loved ones have an uncommon medical disorder, it may be hard to find the right information, support, and research. 

Even though rare diseases are an uncommon occurrence, they are not a unique scenario when taken as a whole. In Australia, about 2 million people amounting to around 8% of the population suffer from rare diseases. 

Fortunately, though the condition may be rare, individuals dealing with rare diseases need not be stranded and devastated without assistance to overcome their condition. Finding the right support system, a specialist, or a support group like Alexion Australia can help.

Here are some helpful pointers to help you or your loved one to cope up with a rare disease:

Get Help, Don’t Fight a Lone Battle 

Often a patient suffering from a rare disease may be running multiple trips to doctors to ascertain their diagnosis. It’s essential to take a friend or family member and get help during their appointments. It might be hard for patients to synthesize all information at once, so either seek help from a loved one or request medical records or notes from the appointment.

Find the Right Specialist

Due to the unusual nature of a rare disease, it can be hard to find qualified specialists in Australia. According to a report from the Australian Paediatric Surveillance Unit, people living with rare diseases face hardships, including delay in diagnosis, lack of access to treatment, and difficulty identifying the right health service. Reach out to your family doctor, who can help by referring you to the right specialist who is well-versed with therapy options for your condition.

Access to Resources  

With the wide prevalence of information you can find online, it can be easy to know about diagnosis and treatment options. But not all information is reliable. Several Australian specialists claim that they frequently need to deal with misconceptions that patients have from looking up information online. When researching online, it’s vital to rely on authoritative resources from reputed providers such as Alexion Australia and other medical centres. 

Connect with a Support Group

If a patient is expected to undergo a procedure, they might have concerns and anxieties. It’s recommended to speak with other patients who might have sailed the same boat and get some reassurance to eradicate confusion. Talking with such people can help you gain confidence and provide you with a determination to cope and fight the disease. It’s also best for patients and family members to have access to psychological support and genetic counselling when receiving a life-changing diagnosis.

Have Hope

Finally, not all rare diseases are adverse or non-treatable. Advanced medical technologies offer a new lease of hope and are continually progressing to develop a potent treatment for your condition. Have the hope to tide over any situation to enhance the mental strength that can go a long way to help you or your loved one bounce back.

About 80% of rare diseases in Australia are genetic. Given the complex nature of rare diseases, finding the right medium of support and expertise from healthcare providers such as Alexion Australia can help you deal with a rare disease the right way.