Rare Disease Day is February 28, 2018. The objective of Rare Disease Day is to encourage researchers and decision makers to address unmet needs and find new treatments for people living with rare conditions. This year get involved and raise awareness for sucrose intolerance.
What’s a Rare Disease?
A disease is considered rare if it affects fewer than 200,000 people at any given time. In fact, rare diseases are actually pretty common. In the United States, there are 7,000 rare diseases affecting 30 million people – one in ten – and more than half of them are children.
People living with rare diseases have several unmet needs in common. They are often misdiagnosed, they have to wait a long time to receive an accurate diagnosis, and there are very few treatments and no cures available for their diseases.
Eighty percent of rare diseases are attributed to genetic abnormalities. Even when symptoms aren’t present at birth or during adolescence, the disease remains present throughout the person’s life. Such is the case with genetic sucrase-isomaltase deficiency (GSID), also referred to as sucrose intolerance.
What Is Sucrose Intolerance and How Rare Is It?
Sucrose intolerance is a rare disease caused by the absence or low activity of sucrase or isomaltase, the two enzymes responsible for digesting sugar (sucrose) and starch (maltose). Sucrase breaks down sucrose (table sugar) into fructose and glucose, and isomaltase breaks down starch into simple sugars that the body can absorb and use for energy. People with sucrose intolerance experience bloating and gas, chronic diarrhea, and stomach pain after eating foods containing sucrose.
It is tricky to know exactly how many people have sucrose intolerance. Past studies estimate that it affects about .02 percent of North Americans of European descent. Rates are higher for people in specific ethnic groups: 5 to 10 percent of Greenland Eskimos; 3 to 7 percent of Canadian Indigenous Peoples; and 3 percent of Native Alaskans. Experts believe the actual number of people living with sucrose intolerance is higher because it is often misdiagnosed. But several different tests are available to aid in the diagnosis of sucrose intolerance.
How Can You Help Raise Awareness for Sucrose Intolerance?
You can get involved in lots of activities to raise awareness for sucrose intolerance on Rare Disease Day 2018:
- Host an event or find one in your community.
- Send a letter to the editor of your local newspaper. Download a sample letter.
- Share your story about living with sucrose intolerance by taking part in the Handprints Across America campaign. Post your selfie holding a printout of the Handprints flyer on Twitter or Instagram using the #HandprintsAcrossAmerica hashtag.
- Participate in social media. Post and tweet about your experience living with sucrose intolerance using these hashtags: #ShowYourRare, #RareDiseaseDay, #RareDisease, #SucroseIntolerance, #GSID, #1in10, and #CuresNow.
- Raise Your Hand to show your support for Americans affected by rare diseases. For every click on the banner, Lundbeck will donate $1 for rare disease research (up to a maximum of $10,000).
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