October is Rett Syndrome Awareness Month, and even though the pandemic has changed the way that we celebrate it, there are plenty of ways to get involved! Rettsyndrome.org has organized a number of different events, fundraisers, and other activities to advocate for those living with Rett syndrome.
About Rett Syndrome
Rett syndrome is a severe, rare neurological disorder that primarily affects females. It was once thought to be a form of autism, but has since been distinguished as its own disorder. It is a genetic disorder, with a mutation occurring on the X chromosome. The exact location of this mutation and its effects are unknown, but researchers do know that it is typically a sporadic mutation. Symptoms of this condition usually appear between the first 12-18 months of life. Effects include slowed brain growth, a small head, issues with muscle coordination, social anxiety, lack of language skills, seizures, uncoordinated breathing, and a tense or irritable disposition.
After these symptoms are noticed, doctors will conduct a clinical examination and rule out other conditions, such as autism. Genetic testing will be used to confirm, and it can also show the severity of a specific case. There is no cure for Rett syndrome, and treatment consists of symptom management. Doctors will suggest physical, speech, and occupational therapy. They may also prescribe anti-seizure medications.
How to Get Involved
Awareness is essential when it comes to rare diseases. It helps patients find the correct diagnosis, brings in more money for research, and creates a sense of community for patients. Luckily, Rettsyndrome.org has made it easy to participate and raise awareness.
Joining the 31 Days of Rett is one way to get involved. Using the hashtag #OverPowerRett and tagging @Rettsyndrome can spread informational posts about the condition all across social media, educating those who may not know what Rett syndrome is. Buying jewelry, stickers, t-shirts, and temporary tattoos from Rettsyndrome.org is a great way to raise money. Posting pictures in your merch is a great way to raise awareness too.
There will also be events, such as the Raise a Glass Against Rett gala, in which patients will share stories, medical professionals will talk about the latest research, and more methods will be given to raise awareness. Tickets cost $50 and come with a choice of a beer or wine glass. It will be held on October 24 at 8 PM, and you can buy tickets here.
Other ways to get involved include:
- Participating in Light Up The Night on October 29 in which people are encouraged to use purple lights to spread awareness
- Donating to the Facebook fundraiser for research and impacted families
- Creating a personal page to tell the story of a loved one with Rett syndrome
- Helping to officially declare October as Rett Syndrome Awareness Month
- Attending one of the many events
- Participating in Speechless for Rett
Doing one of these things will help to spread awareness for this rare disease.
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