People dealing with rare medical conditions are considered medical mysteries because their diseases can hardly be diagnosed. This is because rare diseases can only affect 200,000 people or fewer at a given time. This means that there aren’t enough viable cases to gather reliable information from.
Some diseases are so rare that they only have one case in history, whereas common diseases affect thousands upon thousands every day. The medical community created the necessary treatments for these common diseases because they often occur enough to be treated.
Unfortunately, the rarity of your condition makes that a challenge, but that doesn’t make your condition any less real compared to common illnesses. In fact, knowing that you are among the few who have had such a condition may encourage you to help science through research initiatives.
Deciding to become a paid patient research volunteer can be overwhelming, particularly because you’re putting yourself under the probe and microscope. However, doing so will allow you to speak directly from your own experiences, identify symptoms you have felt, and potentially make medical history in the process.
Raise Awareness to the World
A rare medical condition is next to impossible to treat because doctors still don’t have a good grasp on how they can help you. To them, you are a medical mystery that is yet to be solved. But that shouldn’t stop you from getting the help you deserve to battle your condition and ultimately succeed.
Some people might not acknowledge the reality of your condition because they have never heard of it before. As with most rare medical conditions, raising awareness about the symptoms and impact it has on the lives of those who have it can potentially save lives.
However, by partnering with research institutions that aim to identify rare diseases and discover solutions to treat them, you can take the bad and turn it into some good. Of course, helping the medical community won’t make your sickness disappear, but it can make the experience worthwhile.
You can also be asked to share your firsthand experiences in dealing with a rare medical condition through surveys, interviews, and joining online communities where you can directly speak to an audience. Think of this as a manifestation of your altruism that can help save future patients with the same disease that you are fighting against.
Help Develop Treatments and Solutions
There are plenty of biotechnology and pharmaceutical companies that are always on the lookout for the next big breakthrough. Such companies are focused on finding new markets to dominate and are also enthused to become a trailblazer in treating rare diseases.
Think about it this way, there was a time when people who were sick with polio had little to no chance for survival, and those that were lucky didn’t leave unscathed. But today, people no longer have to deal with the uncertainty because vaccines for polio are easily accessible.
Your valuable contribution as a research volunteer can help the medical community gather enough data to develop an appropriate and viable treatment for your condition. This process can last for a few months to a few years, but it can still be better than not having any hope to cure your condition at all.
With your assistance, doctors might trace the source of the disease — whether it’s mutations in a single gene leading to a hereditary condition or not — and create a specific list of symptoms related to your case. They can also identify if your condition results from continuous exposure to environmental factors like your diet and lifestyle habits.
Why Should You Help the Medical Community?
You might think that volunteering for research initiatives will mean becoming a guinea pig for the medical community, but that is not the case. At the most, you can be invited to participate in clinical trials that can help gather reliable information about your condition.
Partnering with an established research community can also bring your closer to people dealing with the same conditions as you and let you know that you aren’t alone in this battle. You might get emotional and physical support from strangers along with your family’s support.
Lastly, through the research initiatives, you can also learn more about your own medical condition, the treatment options available, if there are any, and the current status of the medical community concerning your rare disease.
There might only be a few people in the whole world who can actually understand what you’re dealing with, but that doesn’t mean that there aren’t those who want to help. Let medical professionals help you by using your voice and sharing your experiences with the world. Who knows? You might be able to help others like you in the process.