We still Hope
Hello Ann! Welcome to the group! Looks like you have your hands full with all those kiddies:) Your fiance sounds like a great support system. I hope you find the support and encouragement you need. Take care, Tosin aka Sickle Cell Warrior
Hello Ann, welcome to the community. You have been thru a lot and still pushing through, I hope and pray that things get better for you and your children. Stay strong and take care.
Hello Ann welcome :-) I found that essential oils and a good basis for nutrition is key to managing Sickle Cell and It does seem like you have a lot on your plate. If I can help in any way for relief please let me know I can share my story with you. I do want to add that I am so happy to see that you decided to have children I've been so scared to take that step because Doctors told me something similar to me and my mom when I was younger. Thank You for sharing.
Hi Ann I am introducing myself to you I was born with SC disease and I am 50 now recently I was diagnosed with proliferative sickle cell Retinopathy (which is bleeding of vessels into the eye so I am urging all member whom have sickle cell (SS) or trait which is either AS or Ac , I have SC disease which is a variation of the diseases its not as harsh as the type you have as (SS) is more severe when you live in a cold country ,And Ann I wonder why some times but I love my family they love me its been hard some time but with faith ANy think is possible I am one in a billion and I am here for a reason the pain and issues worry me but I continue "he put me here for a reason god i mean and without him we may not have reached where we are I joined this site to meet and speak with member with the same or similar situation
Hello Ann how are you, my situation is similar to yours. My oldest daughter had the disease, and my two youngest daughters, have the trait. Just like you doctors used to tell me that I would die early, but now I am 49 and i am still here. Some nurses dont understand the disease, and even some doctors. And when you get older if you develop pulmonary hypertension, there are some wonderful medications that can help you. So welcome to the group, and I wish you well, with as few crisis as possible.
Hi there, I feel you.
Have you asked about a bone marrow transplant? It can cure this disease and the offer it to people with severe disease so you might qualify. You can ask your hematologist if you are at a large academic center or look on the NIH website for sickle cell studies. It works best if you have a full sibling. I am going to the NIH in April for an evaluation for the bone marrow transplant.