r/Sicklecell

I’m a 24 year old F diagnosed with sickle cell SS at birth and I am capable of doing almost anything. I see so much negativity on this sub and many of y’all limit yourselves into what you can do. In the past year I’ve been to 3 different countries traveled by car/plane/train across the continental USA and been to 2 music festivals including coachella. My last hospitalization was in 2023 and then switched from oxbryta to transfusions, I’ve been on apheresis infusions for over a year now. I just wanted to come on here and say, there is no limit. I know doctors scare us sometimes and say we can’t be normal people but we are!! A disease or disability should not put a barrier on how we live our life. I am very active. I love to practice yoga and pilates, I’ll go for walks with my friends and to the lake with my boyfriend. I’ve gone skydiving, driven atv’s, crossed jungles in canopies, and camped in the desert. I share this in hopes to inspire some of you to live your life!!! We only have one and tomorrow is never promised, so f it and live it up! 💕

Many women want a man who is strong, dependable, protective, and able to provide safety and stability for the family. Naturally, some people wonder whether a man living with sickle cell disease (SCD) can realistically fulfill those roles.
Some common concerns include:

Sickle cell disease can involve frequent pain crises and health complications, which may affect a man’s ability to work consistently or maintain financial stability.(cost of living is crazy now)

In physically dangerous situations, there may be fears that intense stress or injury could seriously affect his health.

Some women worry that the relationship dynamic could become more like caregiver and patient rather than equal partners.

Raising children is physically and emotionally demanding, so concerns may arise about whether ongoing illness could place extra pressure on the family.

Because of these concerns, I feel the challenges may outweigh the benefits when considering a long-term relationship with a man who has SCD.

Women can you date or marry a guy with SCD?
SCD men do you think it’s best you do not date or marry ?

We are scouting for either a Person Living with SCD OR a Healthcare Provider (Doctor, Nurse, NP, Advocate) who treats SCD for a paid digital media project.

The Theme: A health or medical fact learned that changed the course of treating sickle cell disease. (Whether as a patient taking control of your care, or a provider shifting your clinical approach).

What We Are Looking For:
• You are a patient or an active SCD healthcare provider.
• You are highly comfortable on camera, have experience filming video content of yourself, and are comfortable being featured on social media.

💰 This is a paid opportunity.

⚠️ Seats are limited for this feature. We will close applications as soon as the spots are filled and won't be able to respond to everyone.

👉 How to apply: Comment below or slide into our DMs. Please state whether you are a patient or provider, give us a snippet of the medical fact you'd want to talk about, and confirm your video experience!

I just want a normal life, I like working and feeling “normal” I’m on disability but it’s not enough for me, I don’t feel fulfilled if I’m not working.

I’m a paralegal so it’s not a job that I can afford to miss a lot of days due to deadlines and stuff like that, so I understand why I was let go, but it’s not fair 😭

Sorry just venting…

For context I had my baby a month ago (April 16th)
And since then I’ve been having a very bad crisis for the past couple weeks. I’m currently admitted rn but the doctor has basic I been dismissive of my pain and I also have a witness to this bc my bf is here. Would I be wrong if I asked for them to discharge me tn and just go somewhere else or what should I do? I’d also like to add I was told by my on and the labor and delivery hospital that my first crisis after giving birth would be hell so I’m just wondering if I should do what my mind is telling me or not I don’t want to be looked at as a drug seeker but I also don’t want to sit here in pain being mistreated.

If you’re reading this, you’re deserving of love and the fullest life imaginable. I pray if finds you swiftly and that you have a heaping portion of good health. And if no one else tells you today, I love you and I’m proud of you🫶🏾🤗🥰

I’m nearly 30 years old and I’ve been sick so much especially when I’m about to advance my life forward with goals that end up ruining my motivation for everything when I get a crisis. Surprisingly enough it happens every time I’m about to reach a goal and then I end up unable to finish that goal. I get sickle cell crises off changes of weather, temperature, too much excitement or if I get too anxious or if I get sick. I currently feel like a shell of what I used to be. I’m not depressed I just feel stuck. I want to ask you all if you were ever in a situation like this that lasted years? I currently am not suffering from as much crises as I used to however I had pneumonia this past November and I still feel fatigued from morning to night. What did you do that got you to a successful place in life? What do you recommend I try? I just want to give back to my family who gave me years off their life to make sure I stayed alive and happy. 😁

She said she has to do what's right for her and that she hopes I find someone who can love me but that being HbSS is a dealbreaker because she'll never feel secure

I don't know what to do or how to feel, it took courage to tell her about it and I don't know I don't know

I'm questioning what the point of living like this is

I noticed my son has been tugging on his eyes a lot and I called a optometry thinking he could be seen his 19months but they told me that he would actually need a referral since his so young and he would need to get a pediatric ophthalmologist But I don’t know if I should speak to a hematologist about his pediatrician lol this might be a silly question but I am kind off torn and confused about it and just needed clarity coz I know eyes is important thing to check when you have SS

Im 51, I don’t eat slot I was wondering if more red meat and iron will bring it back up. I eat twice a day and don’t get much protein.

I got a refer to a new doctor so I’m going to make an appointment.

My blood work shows a 11.2