It’s October, so you know what that means – it’s Homocystinuria (HCU) Awareness Month! The goal of HCU Awareness Month is to raise awareness of homocystinuria throughout the medical community and general population. Additionally, HCU Awareness Month can help raise funds to contribute to homocystinuria research and support those with this condition.
Today, we’re going to share information about homocystinuria along with some amazing resources and ideas from HCU Network America on how you can get involved and raise awareness each and every day.
What is Homocystinuria?
Homocystinuria is a rare inherited disorder in which the body is unable to properly process certain amino acids, such as methionine. It is inherited in an autosomal recessive pattern. This means that patients must inherit one defective gene from each parent in order to inherit this disorder. As a result, there is elevated homocysteine in the blood and urine. There are multiple forms of homocystinuria, such as classical and X-linked. While symptoms vary based on subtype, potential symptoms and characteristics can include:
- Long limbs and a tall, thin build
- Psychiatric and behavioral disturbances
- Megaloblastic anemia
- Chest deformities
- Increased risk of serious blood clots
- Lens dislocation
- Intellectual disabilities
- Failure to thrive
Raising HCU Awareness
So, during October, you might be wondering: “How can I help to raise HCU awareness?”
HCU Network America offers a fantastic HCU Awareness Month Activity list with an activity you can do every day to help raise awareness. For example, the activity for Day 1 would be to change your photo on your social media accounts to the HCU Awareness Ribbon. For Day 2, you could brainstorm ways to begin a fundraiser to support HCU Network America or other organizations working to support those within the homocystinuria community.
These activities span the entire month, offering numerous opportunities for involvement. The activity list, which you can also find here, also offers certain hashtags you can use on your social media, such as #ToastTocHCU, #HopeConnectsUs, #HCUAwareness, and #GoBlueForHCU. Feel free to use these hashtags to learn about and share stories across social media – even if that specific day’s activity doesn’t require it.
Ultimately, there are so many opportunities this month to raise awareness and get involved. We look forward to making a difference and raising homocystinuria awareness alongside you this month!
If you have any other ideas about how to get involved, please share with us at @PatientWorthy on Twitter or Facebook!