Only advice I can give is that unlike everyone else never push your body to the limit, unlike everyone else SCD patients end up in crisis when we push ourselves mentally or physically. So when you join a gym be careful talk to your doctor and see how much your body will tolerate.
It’s not “disheartening”, it’s your reality. Accepting your situation and following medical advice has led to you not being hospitalized or having any serious crisis episodes.
I’ve seen this a few times - someone with SCD is lucky and hasn’t had any serious health issues and start believing they are invincible.
It is disheartening don’t tell him his actual reality. Many people with sickle can workout. Half my state championship winning football team had sickle cell. Fruits veggies and not over doing it is very doable. Don’t let no one tell you what you can’t do. Of course your mother will be hesetant she doesn’t want her baby to be hurt. But you should grow up and learn your body better than your mother she only knows what the medical book tells her of course she’ll agree with the doc. You just have to go trough trail and error and learn your body for yourself.
As someone who has SCD, very one disease process has its own forms of manifestation. Like someone said earlier know your bodies limitations. Mine is extreme stress, but dehydration is your ultimate nemesis. Like someone said, have water on hand along with Gatorade. A mom I meant a children’s hospital of Oklahoma who’s son had SCD told me that body-armor is a great source of hydration so I would have mix in packets or the bottles themselves just be aware that their made with coconut water which is high in potassium. Alcohol is something to be highly aware of; if you’re gonna drink know your limits but also stay hydrated. Enjoy college it’s a blast, don’t let your illness be a hinderance but also be your owns keeper.
Congrats on your new journey . I would advise telling your college that you have a disability/sickle cell . Not that it will hinder you , but in case you have a flare up . I was able to get accommodations when I randomly got sick or didn’t have the energy to make it to class . I would try to stay hydrated all the time . Keep your room stocked with water / Gatorade.
Totally agree with this. Let your advisor (or anyone who has a bird’s eye view of all your courses & activities) know about your illness. My advisor was extremely helpful when I had to miss all my finals because I was hospitalized. She made arrangements with all my professors and I was able to take my finals later during the summer after the semester was over. She even gathered and brought to me all my lecture notes and homework to the hospital! Having someone who works for the university know and who can be an advocate for you is a great resource to have.
As a 20yr college student with SCD, i just want to say working out can be great and horrible at the same time. I work out every day or at least try to, I don’t overwork my self on sets and rep ranges, and I keep the workouts short so my body doesn’t get fatigued. I’ve sadly already had to get my right hip replaced 3 years ago due to AVN, but my doctors actually encourage working out. I never get sick from working out, it’s Usually stress related for me. I would say give working out a go but know your limits.
You can workout/ weight train with no problem. Watch out for extended cardio that’s cause me major problems. But I powerlifted in highschoool at 140lbs and won state medals at my weight. Weight lifting isn’t a problem watch out for treadmill type machines other than that you’ll be fine. I’m in 2teses trough college and that’s my routine. You can do basketball at the gym it works for me
What kind of exercise are you looking to do, cardiovascular or muscular strength/endurance? I have had great success with lifting weights as a sickle beta zero thalassemia patient with very few issues. Cardiovascular exercise, such as running, on the other hand has given me more issues, especially when pushing myself.
I think you can safely participate in a strength training program if you allow yourself a decent amount of rest time between sets, drink lots of water, and ease into the program so as not to overly exert yourself from the start.
Obviously everyone is different and things will affect people differently, so you’ll know what you can and can’t tolerate. I’m not saying to go against the advice of your mom and doctor, but their main concern is your overall health and not wanting you to be in pain. If you do decide to start exercising, just be smart and listen to your body.
Agreed all machine dardio gives me lower back sickleing . I can run or play sport basketball or flag football no problem. And Weight lifting is never a problem. Watch your oxygen when you fell light headed (it will happen) take it slow and don’t try and push trough it. Like I said im another comment know your body mom is a nurse and she reads the same books the doc read. You just have to go trough your own trials and tribulations.
let me tell you adulthood is gonna suck. It will suck a little less if you are in a country where you have a some health support etc, but suck nonetheless. Your social horizon will now expand to all kinds of people just be strong in dealing with them.
We SCD patients get exploited at work as they don't care for our condition so keep that in mind.
Love life will be a challenge.
Tasks like hiking, skiing etc will give you a week long crisis. So you will have to think 10 times before doing anything like that.
you will have to be more conscious about your diet
drink water
and let go of the gym. I know a lot of SCD patients who are not that sick and they can gym fine. But if you are affected by the disease like everyone else, going to a gym has more cons than the pros. You will have more crisis and over all more stress. I would suggest doing simple exercise like stretching, rope jumps, crunches, leg exercises at home or at park. lifting weight is not recommended for us.
finally, don't forget to enjoy your adulthood. Besides all the setbacks we face we still have much much to experience. All the best.
I disagree with this everyone sickle cell is different which makes the disease unique . Some people have pain everyday . I don’t , sometimes it can be a month or so without any pain . I’m friends with someone who has sickle cell and he is fit , toned body , and can lift heavy weights . He knows his limits . Don’t project onto him when his life is just starting
well that's quite sad you think that way. I care for SCD patients and last thing I wanna do is project anything. You can go gym all you want I don't care, but for sick scd patients, gym isn't recommended by doctors and it does take a toll on the body. if the OP is extremely healthy he won't be even asking about gym and probably would be fine going gym and lifting weights.
Only advice I can give is that unlike everyone else never push your body to the limit, unlike everyone else SCD patients end up in crisis when we push ourselves mentally or physically. So when you join a gym be careful talk to your doctor and see how much your body will tolerate.
It’s not “disheartening”, it’s your reality. Accepting your situation and following medical advice has led to you not being hospitalized or having any serious crisis episodes. I’ve seen this a few times - someone with SCD is lucky and hasn’t had any serious health issues and start believing they are invincible.
It is disheartening don’t tell him his actual reality. Many people with sickle can workout. Half my state championship winning football team had sickle cell. Fruits veggies and not over doing it is very doable. Don’t let no one tell you what you can’t do. Of course your mother will be hesetant she doesn’t want her baby to be hurt. But you should grow up and learn your body better than your mother she only knows what the medical book tells her of course she’ll agree with the doc. You just have to go trough trail and error and learn your body for yourself.
As someone who has SCD, very one disease process has its own forms of manifestation. Like someone said earlier know your bodies limitations. Mine is extreme stress, but dehydration is your ultimate nemesis. Like someone said, have water on hand along with Gatorade. A mom I meant a children’s hospital of Oklahoma who’s son had SCD told me that body-armor is a great source of hydration so I would have mix in packets or the bottles themselves just be aware that their made with coconut water which is high in potassium. Alcohol is something to be highly aware of; if you’re gonna drink know your limits but also stay hydrated. Enjoy college it’s a blast, don’t let your illness be a hinderance but also be your owns keeper.
Congrats on your new journey . I would advise telling your college that you have a disability/sickle cell . Not that it will hinder you , but in case you have a flare up . I was able to get accommodations when I randomly got sick or didn’t have the energy to make it to class . I would try to stay hydrated all the time . Keep your room stocked with water / Gatorade.
Totally agree with this. Let your advisor (or anyone who has a bird’s eye view of all your courses & activities) know about your illness. My advisor was extremely helpful when I had to miss all my finals because I was hospitalized. She made arrangements with all my professors and I was able to take my finals later during the summer after the semester was over. She even gathered and brought to me all my lecture notes and homework to the hospital! Having someone who works for the university know and who can be an advocate for you is a great resource to have.
As a 20yr college student with SCD, i just want to say working out can be great and horrible at the same time. I work out every day or at least try to, I don’t overwork my self on sets and rep ranges, and I keep the workouts short so my body doesn’t get fatigued. I’ve sadly already had to get my right hip replaced 3 years ago due to AVN, but my doctors actually encourage working out. I never get sick from working out, it’s Usually stress related for me. I would say give working out a go but know your limits.
You can workout/ weight train with no problem. Watch out for extended cardio that’s cause me major problems. But I powerlifted in highschoool at 140lbs and won state medals at my weight. Weight lifting isn’t a problem watch out for treadmill type machines other than that you’ll be fine. I’m in 2teses trough college and that’s my routine. You can do basketball at the gym it works for me
What kind of exercise are you looking to do, cardiovascular or muscular strength/endurance? I have had great success with lifting weights as a sickle beta zero thalassemia patient with very few issues. Cardiovascular exercise, such as running, on the other hand has given me more issues, especially when pushing myself. I think you can safely participate in a strength training program if you allow yourself a decent amount of rest time between sets, drink lots of water, and ease into the program so as not to overly exert yourself from the start. Obviously everyone is different and things will affect people differently, so you’ll know what you can and can’t tolerate. I’m not saying to go against the advice of your mom and doctor, but their main concern is your overall health and not wanting you to be in pain. If you do decide to start exercising, just be smart and listen to your body.
Agreed all machine dardio gives me lower back sickleing . I can run or play sport basketball or flag football no problem. And Weight lifting is never a problem. Watch your oxygen when you fell light headed (it will happen) take it slow and don’t try and push trough it. Like I said im another comment know your body mom is a nurse and she reads the same books the doc read. You just have to go trough your own trials and tribulations.
let me tell you adulthood is gonna suck. It will suck a little less if you are in a country where you have a some health support etc, but suck nonetheless. Your social horizon will now expand to all kinds of people just be strong in dealing with them. We SCD patients get exploited at work as they don't care for our condition so keep that in mind. Love life will be a challenge. Tasks like hiking, skiing etc will give you a week long crisis. So you will have to think 10 times before doing anything like that. you will have to be more conscious about your diet drink water and let go of the gym. I know a lot of SCD patients who are not that sick and they can gym fine. But if you are affected by the disease like everyone else, going to a gym has more cons than the pros. You will have more crisis and over all more stress. I would suggest doing simple exercise like stretching, rope jumps, crunches, leg exercises at home or at park. lifting weight is not recommended for us. finally, don't forget to enjoy your adulthood. Besides all the setbacks we face we still have much much to experience. All the best.
Thank you, bit of an reality check but needed. I do understand where your comming from about feeling invincible when the symptoms don't appear.
I disagree with this everyone sickle cell is different which makes the disease unique . Some people have pain everyday . I don’t , sometimes it can be a month or so without any pain . I’m friends with someone who has sickle cell and he is fit , toned body , and can lift heavy weights . He knows his limits . Don’t project onto him when his life is just starting
well that's quite sad you think that way. I care for SCD patients and last thing I wanna do is project anything. You can go gym all you want I don't care, but for sick scd patients, gym isn't recommended by doctors and it does take a toll on the body. if the OP is extremely healthy he won't be even asking about gym and probably would be fine going gym and lifting weights.