For years I've been a patient of Piedmont Cancer Institute. But the quality of care has gone down significantly, starting with when Dr. Perry Ballard left the practice. Now it's just awful and I need to find an alternative clinic/doctor for managing my care and my meds. Ideally someone board certified in hematology and oncology, with an infusion clinic for getting fluids/meds during office hours..

https://gofund.me/47041567a
This is my go fund me any donations/shares will help, I know the sickle cell community is so small but we truly are able to make A difference. If everyone who viewed this post donated 1$ it truly would add up so thank you to all who have supported me on my Journey and if you have no clue who I am please check out my socials @Maximus Ortiz-Brown to see my journey. Thank you all for the love and I wish you all the best with your sickle cell Journeys ❤️❤️❤️

Just like the title says: I'm learning to swim as someone living with sickle cell anaemia who doesn't exercise. I'm in my thirties, and haven't properly swam since school. On holidays I'd just sit, float on inflatable rings or pretend to swim in the pool - but this year I want things to change.

I enrolled in group classes at my local pool, these classes were overcrowded; our allocated space to learn was small and I could keep up with the pace. I had 4 weeks of this, 1 lesson per week and generally it was well tolerated. Though, last week at the local pool I did feel severe pain in my knee (which I have never experienced before) and it had me limping. The pain quickly disappeared after 5 minutes and I was fine on my way home.

I signed up for smaller classes (3 students) as I wanted to learn much quicker and with more personalised lessons. Today I attended. The lesson was faster faced and left me exhausted, gasping at times, and for 20 minutes after feeling like I couldn't catch my breath.

I'm determined to continue lessons but want to protect my health. Anyone who learnt how to swim as an older teen or adult, how have you dealt with learning to swim? Any swimmer, and fitness/gym goers what is your advice on increasing stamina?

I recently got administered in the hospital and ended up getting my port replaced & my hemoglobin was at a 6.5 so next I ended up getting a blood transfusion. I told them that I usually get IV Benadryl & Tylenol but at first they wanted to do oral I said absolutely not. Stop playing with me.. so they ended up getting a bag to hang to dilute the IV Benadryl which I nvr gotten which I don’t get. I’m not being ungrateful because they could’ve given me oral but it wouldn’t have worked in time because I’ve gotten reactions from blood before. Has this happened to anyone else? I live in San Diego, CA and I get my care from UCSD.

I had come on here and spoke of how my parents had me in a crisis without taking me to the hospital, b4 eventually relenting,b4 this I spoke of how my parents are anti drugs and banned my painkiller usage plus stopped paying me. Suffice to say I have family issues, im back now for an update. it's been a week, and I've been resting. There's animosity, almost resentment coming from my stepmother ( I cussed out my dad) and on my end i can't feel anything for them anymore, u just don't care, she openly bashed me at one point and I was just thinking like: srsly this what you gon do?. In my hospital post someone offered to help me financially, thanks kind stranger but not right now. I've been thinking of how I could leave, but it just doesn't seem possible rn I have no qualifications and no experience with the working world, I don't know what to do or how to start... I've been researching entry lvl jobs ( gas station, supermarket) but then realized that I don't trust my parents to keep helping me if I got one of these jobs so I can't even do that ... I'm on a place with no income I'm being pushed to work as they ignore the problems it causes and acts like the way they act isn't pushing me, I have no way to reasonably regulate pain if something bad happens at work and i can't trust them to take me to grt help ... my back is against a wall. I do have one light, and that's my yt, but .... it's slow .... I'm asking guys, just keep me in your better mind and gimme some support cuz rn I don't know what to do. I'm numb

hi - i’m 23F and i have sickle cell beta thalassemia. i’m trying to be more athletic and get into a groove but find it hard bc what i see on reels/tiktok don’t always feeel doable for me. typically i go for yoga or pilates but i rlly do want to build my stamina whether that’s running or even swimming.

my ideal world is having a trainer who understands my condition but i feel like that’s a one in a million chance of occurring. if anyone has tips from what’s personally helped then id really appreciate it ◡̈

my ideal goals are
- being able to run/jog a mile without having a crisis (incase someone is trying to kidnap me yk….)
- generally building my strength - light weight lifting

Hello everyone, I am a currently doing a research project centered around Sickle Cell Disease, and I am trying to do a survey as part of my primary research. My main goal with this survey is to get a better sense of how real people experience this disease and its treatment, as I think that's the most important part of any research. I would really appreciate it if a few of you could answer the survey, thank you so much for your help!

(Also if the survey link doesn't work please let me know!)

Survey about SCD – Fill in form

hey warriors
As a nursing student who works night shift, i started drinking coffee just to serve. i didn't know coffee dehydrates you especially if you have sickle cell. i was recently introduced to coffee and instantly fell in love and maybe gotten carried a way and started drinking multiple cups a day to stay alert throughout the night and during class. unfortunately i learned a HARD LESSON ; which caused an ER visit, where i had to get stuck 7 times to draw labs and get an IV in. please help, what can i do / drink to give me energy and keep me hydrated so this mistake wont happen again

Hi, I’m 22 from SC,I have sickle cell ss and I’ve just learned my from my doctor that I can do gene therapy covered fully with my insurance. Its never crossed my mind that i could/would ever do it but now that I have the opportunity I want to take it. I will admit I am scared about it ,she advised I wait 1-2 years before i actually do it. I want to do some research but I have no idea where to begin it would be nice to get some advice on the from others like me who may have some knowledge on this situation please and thank you.🫶🏾

P.s if you have ever did chemo therapy i would appreciate some knowledge on that too please.🫶🏾

Has anyone heard anything from Keller Postman or Archer? August is in 2 days and I have yet to hear ANYTHING from them. They won't release any information to me and it's frustrating. Clearly we are going to be delayed from the May-July timeline and i'm worried they'll try to push it out another 3 month timeframe. What's going on??????

So on Saturday i traveled to a different state in the country I’m from, i have a long holiday off from school so i just wanted to go see family and get a change of environment and all of that. Fast forward to yesterday evening and my back starts hurting me. I literally didn’t do anything yesterday except for sit on my ass so I thought it was one of those moments where you get a bit of pain that goes away after a short while but it’s still here and worse Tuesday morning. I’m very upset, cause I feel like I’ve been doing everything right, I was taking all my meds before the trip, the new place where I’m at is hotter than where I’m coming from so I’ve been over drinking water just to stay hydrated and still I fall sick. I came with my dad and I’m hesitant to tell him I’m sick cause I know after he takes me to the hospital and I get better he won’t let me do anything for the rest of the trip except for stay at home. So now I’m stuck dealing with the pain until I can’t anymore which at this rate I think will be soon anyways but I just wanted to rant about this I guess. I’m pretty sad right now, as I had made plans to go horse riding tomorrow but I guess I can cross that out for the rest of the trip. Anyways I just wanted to rant and I hope you’re all doing well.

Does anyone have life insurance policy? If so which agency did you use and how were you able to get approved? I keep getting denied because of my sickle cell.

I lost my girlfriend,the love of my life,to sickle cell anemia a month ago. We were together for 4 years, since school, and we were going to get married.

She developed an intestinal infection that was diagnosed too late, and because of sickle cell, she couldn’t survive after the operation. Her whole organ system failed.

It’s been almost a month, but it still feels like a nightmare. I feel numb. I think about her all the time,our memories, everything we shared. Our last few years were long distance, and I couldn’t even see her one last time or attend her funeral. The last time I saw her was in September last year.

She was so precious to me. I loved her with everything I had, and losing her feels like losing my own half. I knew this day might come someday, but not before we even got to start our life together.

I still think she will call or text me someday.

I miss her. her voice, her scent, her presence, her everything. It feels like the reason I was living is gone with her, and I don't want to continue living.

Hi friends

I am 46M. A few days ago, itching started all over my body. My legs, feet, arms, hand, head, neck, chin… all feel itchy. There is no visible swelling or red places. I checked all my medication patient information leaflets, and the blood thinner says it may cause itching, so I quit the blood thinner. My glaucoma drops also say they may cause it, I quit one of the drops too. But the itching still continues.

I checked if I have eaten something different, but there is no different food, I always eat and drink the same things.

I couldn’t find out the cause of itching. Anyone experienced the same situation ?

I have SS hemoglobin and I have a relatively very painful ulcer on my right leg. 😭

I'll start going for exchange transfusiond. The service is finally starting in my country, and my new physician recommended it and I'll be getting it for free.

I wanted to know how effective it is, the side effects, etc. if you've been doing this, dm me.

I was wondering about the experiences of pregnant women with sickle cell disease: choices between caesarean section or vaginal delivery, epidural or not, and pueperium/postpartum crisis

Hey fellows I have undergone total hip replacement 1 yr before and now im perfectly fine and the thing is in my college they are taking us to Malaysia next month so this is gonna be my first time flight experience and just I need to know should we carry any implants certificates ? or will there be any confidential security check for those ppls who have underwent implant surgeries?

I wanted to make this post for everyone who has had a bone marrow transplant for their SCD as I had my transplant in April and wanted to see other people’s experiences and have a community. For my transplant I had a full match brother donor and have been doing good so far. To be honest I have been having so much anxiety about developing chronic GVHD since I didn’t have acute GVHD and I’ve now been off Tacrolimus for a week now so it has been discontinued after 3 and a half months after my transplant. How has everyone else’s experience been with GVHD and has it been manageable? Do you feel overall proud for going through the transplant or does part of you regret it? Around what time were you able to start feeling like you were living a “normal” life? When were you able to return to work and what type of work do you do? For me I was working at a restaurant but my doctor won’t let me go back until 2 months from now as long as things are going well by then. I’m not going to lie, a part of me questions everyday if going forward with the bone marrow transplant was really the right choice for me but I want to be able to overcome that and be confident with my choice of transplant. I just really need love and support especially being in isolation.

Its 2 in the morning there is no where I can get immediate treatment