September is a wonderful month to raise awareness. So mark down September 24th on your calendars for the 8th international Atypical Hemolytic-Uremic Syndrome (aHUS) Awareness Day!
aHUS Awareness Day is designed to raise awareness of aHUS, share the stories of those affected, spread an understanding of issues, needs, and research within this community, and help provide resources to families, clinicians, caregivers, and the public.
This awareness day is held on September 24th because “Haemolytic Uraemic Syndrome” first appeared in medical literature on this week nearly 60 years ago.
Each year, aHUS Awareness Day has a different theme. For 2022, the theme is “Awareness through Togetherness,” highlighting the need for support and togetherness within this community. Together, we are strong, powerful, and can use our voices to advocate for increased care, support, and research.
Read on to learn more about what aHUS is, the special campaign from aHUS Alliance, and how you can get involved in raising awareness.
About Atypical Hemolytic Uremic Syndrome (aHUS)
Atypical hemolytic uremic syndrome (aHUS) is a rare and progressive disease which causes abnormal blood clots to form in small blood vessels in the kidneys. As these clots form, they can impede blood flow. aHUS is often caused by both environmental and genetic elements. Genes associated with aHUS include C3, CD46, CFB, CFH, CFI, DGKE, CFHR1, and THBD, among others. Environmental factors include chicken pox, the flu, or other viral or bacterial infections, pregnancy, cancer, certain medications, and chronic diseases.
aHUS affects girls and boys equally though it tends to affect adult women more than adult men. Symptoms can (but do not always) include:
- Fatigue and lethargy
- Hemolytic anemia
- Thrombocytopenia (low platelet count)
- Diarrhea
- Nausea and vomiting
- Headaches
- Double vision
- Abdominal pain
- Swelling of the lower extremities
- Irritability
- Acute kidney failure
- Hematuria (blood in the urine)
- High blood pressure
There are a number of treatments for people with aHUS, including blood transfusions, eculizumab, plasma therapy, kidney dialysis, nutritional and electrolyte fluid balance, and drugs that control blood pressure or expand blood vessels.
Getting Involved for Awareness
So you’re looking to raise awareness but don’t quite know where to start. Here are a few ways in which you can amplify voices and raise awareness on (and leading up to!) September 24:
- Participate in the aHUS Alliance video project. The aHUS Alliance is asking patients and families to submit information to include in a video slide project. If you’d like to participate, please send your name, where you’re from, a photo, three words/qualities describing you during your aHUS journey, and when your journey began. You may also include information about a loved one who has passed by sending their name and where they were from, a photo, birth and death dates, and when their journey began.
- Please send this information to Jeff Schmidt at [email protected] by September 17, 2022.
- Share on social media. If you or your loved ones have aHUS, consider sharing your stories on social media using hashtags such as #aHUS, #aHUSAwareness, and #aHUSAwarenessDay. Alternately, if you do not have aHUS, consider jumping on social and amplifying some of the stories that you see shared.
- Reach out to your community. There are so many ways that you can get involved locally. You can hold a blood or plasma drive to help support patients, or reach out to the media to see if someone would like to cover a story on aHUS. If you’re in school, your teachers may let you hold an informational session or hand out flyers with facts about atypical hemolytic uremic syndrome. Working at a doctor’s office or hospital might let you create learning lunches or other events. The possibilities are endless!
- Donate. Consider donating to organizations like aHUS Alliance that support families and research.
Do you have any other ideas for involvement? If so, feel free to email us or tag us on Twitter at @PatientWorthy to share your thoughts!
Read the source article from aHUS Alliance, and learn more about aHUS Awareness Day, here.
