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  • Areeg Sweis

How to Cope with a Rare Disease

Whether you've recently been diagnosed with a rare disease or have known your diagnosis for years, dealing with a rare and sometimes untreatable condition can be difficult. Aside from managing the physical aspects of a rare disease, you may also feel stressed or hopeless about your medical condition. Thankfully, there are several things you can do to manage your rare disease.


Here are some tips on coping with your rare disease:

  • Find an online or in-person support group or community

Going on this journey as a rare disease patient should not be done alone. There are several communities and patient support groups designated for rare disease patients and their families. These forms of support can provide you with the guidance and knowledge needed to aid you with your medical condition. If you visit the NORD (National Organization for Rare Disorders) website, they provide a list of online communities and support groups you can join.

  • Search for a rare disease specialist

It’s recommended that you add a rare disease specialist to your healthcare provider list. A physician specializing in rare diseases can help you manage your condition by providing treatment (if possible) and giving you advice when needed. However, before setting an appointment with a rare disease specialist, make sure that your health insurance will cover the costs, as some insurance companies will make you pay out-of-pocket costs for seeing a specialist physician.

  • Participate in clinical trials

Many rare diseases have clinical trials, so this would be an excellent opportunity to be a part of a possible breakthrough with your medical condition. Clinical trials tend to provide advanced care for their participants to treat the disease and other incentives. If you're interested, visit this website to find studies near you.

  • Seek counseling if needed

If your rare disease diagnosis starts to take a toll on your mental health, it’s time to find a therapist or psychologist. You can find a mental health professional with experience working with rare disease patients, so they have a good understanding of how to approach your situation.

  • Work on improving your health and wellbeing

Make sure that you stick to a healthy diet and exercise regularly. A good diet and exercise routine are essential for anyone managing a disease. Also, exercising is a great way to reduce your stress, as you can practice meditation or any form of mindfulness to help you relax your mind.

  • Stay hopeful

One of the best things you can do as a rare disease patient is to be hopeful. Managing a rare disease is not easy, but you have to continue being patient and look forward to your future. You'll never know when the day may come when a treatment or cure is created for your condition, so it's essential to stay positive.



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