Journee’s Sickle Cell Disease and How we manage it.
*Disclaimer: this is not a medical article and I am not a doctor. I am simply sharing the knowledge and experience that my daughter and I go through as her caregiver. DO NOT take what I say for fact. If you or some you know suffers from this disease speak to your doctor*
My Daughter, Journee has been battling this disease since birth (obviously). She was tested immediately after her birth but was not diagnosed till she was six months old. Now some of you may not know what Sickle Cell disease is so below is a quick synopsis:
Sickle Cell Disease is an inherited rare blood disorder that makes the red blood cells “contort” into a sickle shape or C shaped cells. The cells can die early which then leave a shortage of healthy red blood cells ( Sickle Cell Anemia) which then will block the blood flow which cause sickle cell crisis (Pain). A person gets Sickle Cell Disease by gaining a defected gene from each parent. If you only inherit one gene then you are a carrier of the trait. Sickle Cell Disease is an incurable disease but has treatment.
As I mentioned earlier my daughter was diagnosed when she was six months old. She has less severe type called Sickle Beta thalassemia. From the time she was born my Juju was put on several medications, but never had a crisis till these last few months. She had her first crisis several months ago and her second one was about month ago.
The pain crisis are excruciating and as mother it kills me to see my baby suffer through so much pain and not have the power to take it away. The second crisis Juju had was the worst and finally one night I cried all night because I felt powerless. After the tears were gone I realized I have an amazing support system and a great team of doctors we have. Now that Journee is having pain crisis more frequently, her doctor suggested that we should put her on preventive medicine to help stop the crisis before they get worst.
That medicine is Ibuprofen. Yes its over the counter and yes it works. As soon as she says she is in pain I give it to her. I also use heating pads on the area where the pain is located to help relax her muscles. The biggest preventive action we take is making sure she gets lots of water especially during the summer months as to keep her blood circulating and to keep her blood cells from getting clogged.
These at home remedies have made a difference to our at home care routine to keep her out of the hospital as much as possible. I do whatever the doctors ask me to do and I listen to my daughter and how she is feeling. Sickle Cell disease is a lifelong disease and everyday we are learning more about how to cope with manage through the pain.
If you or someone you knows has Sickle Cell Disease share your story below.
