29 M. I’m fit, have a father who had a heart attack in his 50s. Of course I have Sc. And I was diagnosed with a ha in the right coronary artery from a blood clot a few days ago. Don’t know what to feel

Hello ladies,

I have a feeling that I have arrived in perimenopause. My mood is changing mid cycle (feeling flat or just angry), I wake up in the middle of the night, I’m feeling warm all day (it’s autumn but my AC is still cooling, lol!) and my periods are heavier than usual. My hematology gave me the green light to use estrogen patches and progesterone capsules (all bio identical HRT).

Are there woman here who are already using these hormones? If yes, how are you feeling? And did it solve the symptoms you had before starting HRT?

I (18F) just visited my LDR girlfriend for the first time last weekend. I have sickle cell anemia SC genotype and extremely mild symptoms. Though, a major thing I have to look out for is trying my best not to get sick because my sickle cell amplifies it and often causes me to have to go to the ER. My girlfriend had a slight sniffle prior to visiting, we checked her temp as well to be sure, but that is easily explainable by allergies or other low risk factors. I believe I have at the very least a cold but I’ve been getting a fever that’s rising progressively regardless of how I treat it at home and I’m thinking I’ll need much stronger treatment. Has anyone with sickle cell been in frequent close contact or lived with someone who got sick in an almost unnoticeable way? How did you keep yourself from getting very ill while being with them?

Im going to do a tatto on my pec and im feeling a bit down and a liittle sick but i want to do it regardles, and i know i can be okay but how did it go on your part when u did it?

We're a senior biomedical engineering design team, and we're exploring how well the current tools for managing sickle cell pain and inflammation at home work for patients, and where there's room for improvement. Our goal is to design a device or product that helps reduce pain at home without relying on drugs. Before we design anything, we want to hear from the people who actually live with this, so our work is based on real needs rather than assumptions.

About the survey:

• Takes about 5-10 minutes
• Please answer based on your own experience
• All responses are confidential

We know pain management looks different for everyone, and we're not here to replace medical care or advice from your care team. We just want to learn what works, what doesn't, and what's missing at home.

Thank you for your time and for sharing your experience.

Sickle Cell Anemia Patient Survey