Connecting With Others Who Have Narcolepsy Type 1

How Can Narcolepsy Support Groups Help?

Narcolepsy support groups can provide lots of extra benefits to help you manage your narcolepsy. You'll meet other people going through the same thing, get tips on how to manage your condition, and share your story, too.

One of the best ways to get support if you have narcolepsy type 1 is through a support group. There are lots of ways the group can add to your overall well-being.

A narcolepsy support group can be very helpful even if you're happy with your medical care. That's because though you may like and trust your doctor, they may not be able to give you the emotional support you need. 

You can certainly talk to family and friends, but they may not understand the full impact narcolepsy has on your life. If you're part of a support group, you are surrounded by people with the exact same condition. 

This way, you can meet both your medical and your emotional needs. You'll also learn tips about how to live and manage your everyday life with narcolepsy.

Tips for Living With Narcolepsy

When you are part of a narcolepsy type 1 support group, other members can provide support and practical advice. 

Some of the things you may want to ask about or discuss are:

Ways to develop self-awareness. If you've just been diagnosed, you may not know what triggers or worsens your symptoms. When you talk to other people with narcolepsy type 1, you can learn what helps. 

One person may find medication helpful for driving or for preventing cataplexy symptoms before a social outing. You'll also be able to get lifestyle tips, like when to take naps so you don't feel as sleepy. 

How to educate others. Friends and family may be confused about narcolepsy type 1. They may wonder why it doesn't look like the narcolepsy shown in movies. Or they may not really know how much it impacts your life. 

Other people in your narcolepsy type 1 community can suggest ways to talk to your loved ones. And they can help you ask for physical and emotional support, too. 

Best communication strategies. It's important to talk with your family, co-workers, and friends about your narcolepsy symptoms. You'll want to let them know how they can help you. The more open you are about your narcolepsy symptoms like sleepiness or cataplexy, the less likely you are to hit roadblocks.

Other people with narcolepsy can offer advice on how to ask for flexibility – both in your professional and personal life. You may need to:

• Schedule nap breaks at work.
• Miss certain social events.
• Explain why you've fallen asleep while you watch a movie. 

You can also find educational materials, webinars, and even conferences at many narcolepsy support group organizations. These materials can help you teach your family and friends about your narcolepsy. 

Where to go for counseling. Some people with narcolepsy benefit from individual therapy. Counseling can help you manage your emotions. 

It can offer tools to help you live with your condition. People in a support group may also recommend a therapist or other mental health provider.

How to stay on top of medications. Your doctor may prescribe certain medicines to help you manage your narcolepsy type 1. You'll need to follow their instructions, to gain control over your symptoms. 

Other people with narcolepsy can give you advice on what helped them stick to their treatment plan. You can also ask about how to manage any side effects.

Community Management for Narcolepsy

Support groups offer a great way to get more involved with the narcolepsy type 1 community. But there are many other ways to get more involved in your own community.

Learn about clinical trials. These research studies help find new treatments and medications for narcolepsy. They may help by offering a new medicine not available on the market. 

Your doctor may be able to direct you to clinical trials near you. You can also find a list of clinical trials on the Narcolepsy Network website or ClinicalTrials.gov. 

Join a patient registry. A registry is a collection of information about a group of patients with the same condition, in this case narcolepsy type 1. The goal is for researchers to detect patterns and identify common symptoms. 

The registry may better define the condition and help researchers come up with newer treatments. The main patient registry for people with narcolepsy is run by the nonprofit Coordination of Rare Diseases at Sanford (CoRDS). 

Share your story. When you talk or write about your narcolepsy experience, you can help raise awareness. It also lets others know they are not alone. 

Advocacy groups like the Narcolepsy Network make it easy for you to share your story online. But there are other ways to raise awareness, too. You can speak about your narcolepsy at a local club, organization, or even church or synagogue. 

You could even give a talk at your town library or write an article for your local newspaper. The more you get out and share your story, the more likely you are to connect with others. You'll benefit, and they likely will, too.