u/sunainamakhija

Best way to explain thalassemia (minor and major) to a noob

I’m. TDT beta. My parents never (nor encouraged me to) disclosed my health condition all my life due to the social stigma in my country. As an adult, especially now, I’ve been slowly opening up to people around me about it.

I don’t know if I’m getting through though. My intent is 1. awareness, 2. to get themselves screened and 3. to get them to understand why I don’t have the energy to have the social life they expect

How do you break it to your friends/relatives?

reddit.com

u/sunainamakhija — 14 days ago

▲ 10 r/thalassemia

Mental health of Thal majors

Hello :) Athena is a peer-led mental health support group in the making. It will be for adults (above 15 yrs) living with Transfusion Dependent Thalassemia Beta (aka Thal majors) to have a common space/hub to interact and share lived experiences. It’s started in Bangalore, India but is for a global audience.

Before we start, we want your inputs via the linked form. Please do fill in the form that will help us make this group more relevant to you.

PS - These forms are completely anonymized (I.e. doesn’t ask for any personal info)

u/sunainamakhija — 2 months ago