They really do but until they take the disease as serious as cancers and other illness we probably won't get far ! 😓 and it's sad to have to sit here and wonder is there is ever going to be any hope on even getting close to a cure or better treatment other than narcotics I'm only 20 years old and already have to worry about a hip transplant being in my near future ! I'm just so glad my baby doesn't haven't !! 😞

Omg that's terrible!!! @rylees_mommy !!!!! In a short year I'm already ready to go back to college to take up nursing and specialize in hematology and sickle cell! I can only imagine your journey being in your twenties But I remember being 17 on a trip with a boy who was maybe 12/13 with sickle cell n basically it seems as though most felt he wouldn't last long that was 15 years ago so it seems modern medicine has come a long way that or it's just further proof at how resilient our people genetically are but the medical industry has so far to go with SCD 🙏🏾

My exact same thoughts sadly, I use to have people when I was little yell eww don't touch me because they thought they were going to catch it , then the doctors in the hospital don't care to make sure you're actually ok they just write you up a prescription without actually doing anything !! It's like you're speaking a foreign language when you speak about it.. I have to drive 3 hours just to see my hematologist it's sad !!

Omg that's crazy!!!! I found out somewhat the hard way because I lived in a predominantly white and Asian neighborhood and though hey had hematologist they were not used to SCD but now that in in Nevada I see there are many so when I switch my insurance I am researching first to get the best hematologist for her so I don't spend time trying to educate and convince them when a problem comes up smh it's like it's really a racist disease and nobody cares because it only effects people of color smh if it was hitting white people it would get much more support smh @rylees_mommy

I'm not too good with pain but they have giving me two different types of pain medication when I have a crisis I try to get an I.V. Before turning to medicine though but sometimes it doesn't help especially since there are no hematologist where I live and I always end up finding myself teaching my nurses and doctors what SCD is

Yea I was and am very apprehensive about giving it to an infant as they just made this update to include infants in like 2014/2015 but for adults I've read it's been used for like the past 15-20 years. So far my niece says she doesn't see any adverse effects she's been on it since October and didn't have her first crisis again until early April compared to having them constantly. I really didn't like that it lowers your white blood cells and makes you more susceptible to infection which is a serious issue for those with SCD. If my baby gets to a point of having serious and frequent crisis then I would def look into using that drug other than that I'm trying to steer away from getting her on drugs and becoming dependent upon them at a young age. How do you manage your pain? @rylees_mommy and forgive me I don't mean anything bad about taking drugs I am sure SCD pain can be debilitating I've just never been one to want to take pills or prescriptions unless I physically have no other choice I have a high pain threshold and I kind of condition my kids not to run to medications when they are not feeling well.

She has the trait , I'm the only one in my family with the disease , everyone else either doesn't have it or has the trait , after I've had my baby I've had a lot of mini episode of pain crisis , my doctor wants to start me on hydroxeruea but I'm nervous about taking it

Thank you @rylees_mommy so far so good even the doctor said her hemoglobin levels were good enough that he was ok with me not electing to give her Hydroxeruea which they now prescribe for all babies with sickle cell from 9 months on. She's only had one crisis since birth, my niece has sc and up until she turned five and started the hydroxeurea she was always having crisis and in and out hospital now she goes longer with no crisis. Question does your baby or babies have the trait or disease?

@ginag918,

I hope you and your baby can get peace from the pain!! I have sickle cell SC disease and I know how hard it can get!! 😞

You're welcome! 😊 @June smommy_15

Thank you so much. I never knew how much that really matter. Thanks for the info and advice.

Well thank god my baby has only ever had one crisis in the 15 months she's been here she has the SS which is supposed to be the more severe strain of it it effects the blood as to how it forms and passes thru so if the blood cells are misshapen then they get clogged up and will cause swelling in extremities, high fevers and halts the spleen from doing its job, she can't be in extreme heat or cold, she has to stay hydrated, her immune system is at a disadvantage so she takes antibiotics daily to have a barrier against bacterias that may just make us a little sick but could be more fatal for her. Some people with sickle cell require blood transfusions, have to have spleen removed, some due to the severe pain crisis can end up wheelchair bound, there are certain sports that she probably should not partake in but I do not plan to place any limitations on my child, high elevation is not good for her like going up in mountains because of the blood oxygen levels changing. For the trait there is usually no issues though some report having crisis with having only he trait it's pretty rare. I would say to make sure you find out what his is like is it as or ac I think are the differences and educate him on why it is important to have hose conversations with mates about having the trait I knew I had the trait but kind of forgot and my BF knew he had it but I didn't think about it until they told me my baby could possibly have the disease that's when I really began to educate myself but I should have done so long ago but my mom or anyone didn't explain to me the importance not to say that would have stopped us from having baht because it's like a 50/50 chance of havin a baby with disease if both have trait @Junesmommy_15 so I say even though he only has trait educate yourself so you can educate your baby when the time comes hopefully by then there will be a way to prevent this or cure it instantly