Having a rare disease isn't all that rare! After all, rare conditions affect approximately 300 million people across the world. As such, there could be a great impact if awareness of a rare disease is done by a person experiencing it.
People who live with rare conditions often face greater challenges than those who are suffering from common diseases. This is because only a few of the rare diseases have an FDA-approved treatment (around 5%), and most of them have no cure. To make things even more complicated, rare diseases only have a handful of health care professionals who specialize in them. It's likely for a doctor to have never seen a specific rare condition. It can also take quite a long time to get correctly diagnosed as health professionals are trained to diagnose common health problems.
As a result, victims of rare conditions end up becoming self-trained experts in their diseases. To help others, raising awareness by sharing what you know is important: it could go a long way to encourage decision makers and researchers to explore specific needs and come up with medications for people with rare conditions.
Here are some strategies you can deploy to help raise awareness of your rare condition.
Engaging in online community conversations
There are many online platforms where people with rare conditions can connect, such as advocacy websites, patient support groups, social media channels and patient blogs. There are also online therapy reviews from Relief Seeker. Connecting through these platforms demonstrates your support for those with rare conditions across the globe.
You can also share posts on Facebook, Twitter or Instagram to spread what's happening in your community. You could simply post a comforting message to someone with a similar rare condition, or include the latest scientific findings, or just reply to a post and share your experiences.
Teaching people about your condition
While talking about your condition could be uncomfortable, speaking out could help other people - such as your family members, friends or co-workers - to learn about it. Describe your daily experiences (symptoms) in the simplest way possible. To help other people, explain what they could do, and encourage them to ask you questions.
It's also important to speak to your doctor about your rare condition. By notifying health care professionals early on, it could lead to an earlier diagnosis and improved health care for other patients in the future.
Before you talk to your doctor, follow this simple advice. First, you need to have a symptom diary to track information for previous medical appointments as well as your daily symptoms and treatments. You could either use a small notebook or your phone to track this information. You will then be in a better position to explain the condition and say how it affects you. For extra support and more note-taking, you could bring someone along to your appointments.
Share all research results
You need to stay up to date on the latest research results about your rare condition and find out if there are treatments that drug manufacturers are working on. Share this information with your friends, members of your patient community, and health care professionals.
You could participate in clinical trials and help researchers in testing possible treatments for people suffering from a specific rare condition. To fully get involved, you can do the following:
- Search for websites with information on advances in research/treatments and share the information to encourage other patients with a similar rare condition.
- Participate in studies and research projects to help in future advances.
Working with patient groups
People with rare conditions often feel isolated and alone. They may not know anyone else with the same diagnosis, and that's why they need a lot of social support. Patient groups constitute a vital part of the support network for people with rare conditions. Many victims of rare diseases attend or even organize their social support groups. Social patient groups give individuals a voice and bring them together - an aspect that makes a difference in their communities and across the world.
Volunteering and fundraising
Participating in fundraising activities and donating also helps to raise awareness of rare conditions. You could use sporting events, galas or crowdfunding to fundraise for your cause. You can make a big difference by teaching others about your rare disease.
There is no fixed medication to cure or control chronic illnesses or rare medical conditions in the body. Try to adjust your pain medications following your doctor's advice, and also try to switch to a healthy lifestyle. Use minimal medications and eat healthily to improve the odds of keeping your pain under control.