Whether you live with Sjӧgren’s or love someone who does, April gives you a chance to tell your story. April is Sjögren’s Awareness Month. This month offers a chance to educate people about this lesser-known and often-overlooked autoimmune disease. It also gives people a chance to support those living with Sjӧgren’s.

Here’s what you need to know to join in the festivities to raise awareness, advocate, and build community throughout the month.

What Is Sjögren’s Awareness Month?

During Sjӧgren’s Awareness Month, people whose lives are affected by the disease get a chance to help educate others about it. This can increase the likelihood that someone living with Sjӧgren’s will receive the right diagnosis in a timely manner. It can also help people recognize the disease in others, leading to earlier diagnosis and treatment.

Sjӧgren’s Awareness Month is also a great time to ask others to donate to Sjӧgren’s research. Once they understand what Sjögren’s is and how it affects someone close to them (that’s you!), they may be more likely to donate to efforts to gather more data and find a cure.

Why Is Awareness of Sjögren’s Important?

Sjӧgren’s affects an estimated 4 million Americans, but is also underdiagnosed or misdiagnosed. Even if you are diagnosed, or know someone who is, you may not always understand the disease or how it affects someone’s life. Symptoms can show up differently in everyone. This makes it hard to get an accurate diagnosis in a timely manner.

Sjӧgren’s can present as an invisible illness, since you can’t see symptoms like exhaustion or know when the disease is affecting internal organs. This can make people believe that Sjӧgren’s isn’t serious or doesn’t cause major problems for someone. This is hardly the case. Other common misconceptions about Sjӧgren’s include the idea that it only causes dry eyes — it doesn’t; it can affect many organs in the body. Or that it only affects women (anyone can get Sjӧgren’s).

Understanding the truth around these misconceptions can help people better understand Sjögren’s disease. This knowledge can also help with getting an early diagnosis and raising money toward continued research.

How To Raise Awareness Around Sjögren’s

If you want to join in and help raise awareness of Sjӧgren’s disease, there are many things you can do, depending on your comfort level.

Share Your Story

Sharing your own story with Sjӧgren’s is one of the best ways to raise awareness. Every year, the Sjӧgren’s Foundation highlights people with Sjӧgren’s disease each day of April. They get a chance to tell their story, offer words of wisdom, and talk about how Sjӧgren’s affects their daily lives.

You may not want to share on such a large stage, or you may not be chosen to share. You can still find ways to share your story in your own way. You might write a social media post, talk to people close to you, or organize an event where you speak.

Sharing your story puts a face to all the data about Sjögren’s that’s out there. It can also reduce the stigma some people feel about living with Sjӧgren’s and help them feel less alone.

Leverage Social Media

Sharing on social media is an easy way to offer accurate information about Sjӧgren’s and join the worldwide campaign. Use trusted sources to offer information that will better help people understand this complex disease. You can also use official hashtags, like #ThisIsSjogrens. This will help others participating in Sjӧgren’s Awareness Month easily find your posts. If you don’t have social media, take a Sjӧgren’s quiz online to refine your own knowledge of the disease.

Participate in Events

There are a number of Sjӧgren’s events planned during April. Webinars and walks, for example, make Sjӧgren’s more visible, help people learn about it, and offer a chance to raise money for the cause. If there isn’t an event accessible to you, you can plan to raise Sjӧgren’s awareness in your community, workplace, or at school.

You can bring in a speaker for a lunch-and-learn to educate people or share your own story. A fundraiser is another option that offers people the chance to give financially if they don’t have time for an event. You can even set up an info table at a local event to chat with anyone who passes by. Choose the type of event that best matches your personality, your time constraints, and your community.

Work To Change Policy and Get Funding

If there are specific policies you’d like to see changed or avenues to government funding in your area, April is a great time to advocate for those things. Contact your elected officials by phone or email. Sign petitions if any established organizations have them in your area. Make sure you qualify to sign (usually based on where you live), then ask others to sign, too, by posting on social media. The Sjӧgren’s Foundation offers a hub where you can explore advocacy opportunities and decide which ones are right for you.

Support Research

The easiest way to support research is to donate. However, research is always ongoing, and studies also need participants. If you know other people living with Sjӧgren’s, ask them if they’d feel comfortable with participating in clinical trials. Real-world studies around the disease can help advance our knowledge and may contribute to finding a cure.

Become an Awareness Ambassador

The Sjӧgren’s Foundation has Awareness Ambassadors who help reach out to healthcare providers with information about Sjӧgren’s. The foundation gives you the resources you need to do this job well. If you’ve been thinking about doing advocacy work, April is a great time to sign up and start your training.

How To Show Support for Someone Living With Sjögren’s

Even if you aren’t living with Sjӧgren’s yourself, there are things you can do to support people in your life who are. You might try:

• Learning more about Sjӧgren’s — Particularly if their diagnosis is new or you haven’t taken the time to understand it before.
• Understanding and validating symptoms — Including those that can be invisible, like fatigue or chronic pain. Believing someone can go a long way toward making them feel loved.
• Taking time to help in practical ways — If you know someone with Sjӧgren’s who is in a flare, daily tasks may be hard. Shopping for them or cleaning their house can help tremendously.
• Remembering that they aren’t only living with Sjӧgren’s in April — They need your love and support year-round.

How To Keep It Going Beyond Awareness Month

Raising awareness around Sjӧgren’s shouldn’t stop after April. You can always learn more about Sjӧgren’s and educate the people around you. Continuing to build a Sjӧgren’s community combats loneliness, which can come on any time of year. Finally, advocacy knows no end. There will always be petitions to sign, legislators to call, and ways to remind people that Sjӧgren’s is important and deserves all of our support.

Join the Conversation

On MySjögrensTeam, people share their experiences with Sjӧgren’s, get advice, and find support from others who understand.

How will you raise awareness around Sjӧgren’s disease in April? Let others know in the comments below.