Sickle cell with children

[jo19]

Hi there. My name is Jo and I would love to find other sickle cell patients with children and how you are coping. Thanks.

[AppleCDS]

Greetings Jo. I am hoping to find you someone to correspond with, someone with sickle-cell who has children. I have sickle cell, however, no children of my own. I have a goddaughter who is 19 now. I know 10 - 20 women with sickle cell that have children and I would like to find a way to connect you. I am an advocate for the sickle cell community and would like to correspond with you further, if you would like. If you feel comfortable, send your email address and I can find some other moms with sickle cell to write you. I would like to give you a couple websites and places of where you can find support. Websites: sicklecellwarriors.org,

◾American Sickle Cell Anemia Association - ascaa.org/

◾National Heart, Blood, and Lung Institute - nhlbi.nih.gov/health/dci/Di...

◾Sickle Cell Disease Association of America - sicklecelldisease.org

◾U.S. Centers for Disease Control and Prevention - cdc.gov/ncbddd/sicklecell

◾Sickle Cell Information Center- scinfo.org

◾Clinical Trials and Research Studies for Sickle Cell Disease – clinicaltrials.gov

◾Mayo Clinic sickle cell info - mayoclinic.com

Facebook is also a helpful website to connect, search for people with an interest in sickle-cell disease.

Being a mom is undoubtedly a demanding and unending job, having sickle-cell and being a mom takes energy and a consistent renewal of courage. Be well and I hope that you find a great support system.

Best Regards,

CDS

[jo19 in reply to AppleCDS]

Thanks for your reply appleCDS. You are right having SCD and being a mum of three is highly demanding and does take every single ounce of energy I've got not fighting sickle cell. I would love to connect with you and other mums with sickle cell. My email is [e-mail]. Will love to hear from you. Thanks for the sites you sent. Will check them out. Thanks again.

[Feco12 in reply to jo19]

I'm interested too .my son just recovered from a serious crisis. My email is [e-mail]

[jo19 in reply to Feco12]

Hi Feco12

[jo19 in reply to Feco12]

Hello feco12 I am sorry to hear about your son. What country do you live in? My email address is up there. You are free to contact me anytime to ask about anything no matter how trivial you feel it is. Best regards to your son.

[alebright]

.hi, well I have trait and husband have SS. I had miscarriage and never tried again. Sorry I don't recommend you trying dealing with my husband pain is painful,never have any money due to copays.

[jo19 in reply to alebright]

Hi alebright sorry to hear about your experience. I know exactly how the pain is and how expensive it is managing sickle cell. I wish you all the luck. Stay strong.

[Bluebells]

Hi. I raised a daughter with SC. It is very difficult,but very possible. My daughter is now 32 years old with a ten year old daughter of her own. We didn't find out about the sickle cell disease until she was six years old,and we were devastated! My one and only child.Oh my God!!! She had many crises when she was little.Your children are special without any illnesses, but with sickle cell you must be extremely vigilant and stay on top of all and any aspects of their health.Proper diet,proper care and an abundance of love will get you through this. Oh I forgot to mention a very important factor.. Faith and prayers to GOD !!.

[Bluebells]

I must have read your post wrong.Do you have sickle cell or do your children have it?

[lema]

hi Joe am dorothy from kenya i have a son 2 yrs old and he has sickle cell,yes its hard,demanding,taxing,expensive name it to raise a sickler but who says its cheap to be without a child?i thank God for his life evryday and i dont focus on his sickle cell but him.my email is [e-mail] should u need to contact me.

regards.

[jo19 in reply to lema]

hi lema nice to hear from you. I grew up in Nigeria but live in the UK presently. i remember my parents picking up their salaries and spending it all immediately on my treatment. i used to feel so guilty. But like you said it best to thank God for him and not focus on his sickle cell. i just wish more and more people are educated so this evil condition can be eradicated. Good luck with your son.

[JPraize in reply to jo19]

Hello all, my case is a bit different yet similar! I'm 36, SS, father to lovely 3 kids with traits. My condition was so bad before age 30 as I frequent the hospital in Nigeria much better since I came to the UK, maybe 1 admission or none in a year. I'm so scared of visiting Nigeria talk less of living there. Grateful to God that I am a father. I never thought I could be..x

[jo19 in reply to JPraize]

Hi Jpraize, I am glad to hear since you came to the UK you haven't had to go to hospital frequently. Unfortunately I still go to the hospital regularly but thankfully my husband takes care of the kids God bless him. I know the feeling of worrying about not going to be a parent. I used to worry about that so much. I do visit Nigeria but for health reasons I don't want to live there so I understand where you are coming from.

[jo19]

At Bluebells yes i have sickle cell. i was diagnosed at birth and started having pains from 6 months old. My health put a lot of pressure on my parents and their marriage. It was never easy on everyone. i commend any parent with children that have sickle cell as watching your child in pain can never be easy. All my children are carriers of course and are healthy. i am grateful for them cos to be honest i didn't think i would live this long let alone have a family. I am glad to hear about your daughter and happy she is doing well thanks to you.

[Bluebells]

If you have the disease,I know it is difficult when you are ill. Do you have a strong family support system?My daughter is 32 and has a ten year old daughter. I am her Mother. I am there for her whenever she or my granddaughter need me. I must admit , I would get so frustrated sometimes. I thought my daughter wasn't taking proper care of herself and that's why she was having frequent crises. I just prayed and prayed. Now my daughter goes to Johns Hopkins each month for blood exchanges. It has helped a lot. I still blame myself and my husband for my daughter's disease. I ask God to take this guilt away from me. I hope you are doing OK right now. God bless you and your family!!

[Bluebells]

I must admit that I love my daughter and granddaughter more than anything in this world!!! God knows our every need,and puts no more on us than we can bare.

[alebright]

Thanks, no one knows what med.bills can do to your life until they get sick themselves. But what about people who was born with an illness.

[Bluebells]

I don't know where you live,but in the United States individuals with disabilities are covered under medical assistance. You shouldn't be paying for any medical bills or medications. Sickle cell is a legitimate illness which qualifies you for aid for your medical bills!!!

[Bluebells]

You are not alone. My daughter has a friend who has five children. She has SC disease. It is very difficult for her. Her husband gets frustrated when she is i'll. So do the grandparents. Stay encouraged. God knows your needs. Please continue to keep praying. I know it is frustrating, but Jesus is there for you Remember faith is believing in things we cannot see. I will pray for you and your family. God Bless!!!.

[jo19]

I don't have a strong support network. Its just my husband and myself. I hardly stay in hospital because its hard on my kids so I tend to rush home after taking enough painkillers which of course takes its toll. I have transfusions every 8 weeks. It has helped a lot. The only problem is the treatment I have to undergo for high iron levels. But I still get very tired and my bones ache a lot when I get up in the morning. My husband doesn't have a problem with me going or staying in hospital although I don't get much help at home so its quite hard. But thanks for your words.

[Enjoylife7]

Hi jo my 6 yr old son has the trait .and has a lot of symptoms but his doctors says no hes fine. I'm so worried I've been doing my own research .and keeping him hydrated. I want to find out if he can get tested to see if everything is OK

[anjana_indheal in reply to Enjoylife7]

Hi there, hope you are aware that sickle cell anemia can be cured through bone marrow transplant especially when done in kids. In this process, healthy bone marrow from a HLA matching donor is given to the recipient through the bloodline. The procedure needs to be done in a hospital which has dedicated BMT units which follows high-grade infection control protocols. To read more about the procedure and prerequisites for bone marrow transplant indheal.com/blog/bone-marro...