What To Do When a Loved One Is Diagnosed
Last updated: January 2023
Grateful for 2022 and ready for 2023
With a proud feeling and happy heart, I wish our sickle cell community a healthy, positive, loving, and beautiful new year. I look back to 2022 with a grateful feeling and that gives me hope for this new year.
2023 will be a nicer and healthier year because we live in a warmer state, and we have now been able to tighten all relationships. In my previous article, I shared some tips.
I spoke to a mother who just found out her child has sickle cell disease and she felt extremely upset. Her story touched me as always because I recognized so much from my situation. The conversation with her brought me back to the time when I was still figuring everything out myself and the feeling of gratitude is indescribable.
The importance of a support system
My support system has always played a very important role in the life of my princess and me.
I therefore want to start the year with a positive contribution and hopefully this can help all new parents who are new to sickle cell disease on their way.
Compared to 11 years ago when I first became acquainted with sickle cell disease, there is now much more information, more books, events, and organizations. This makes finding the right information and tools accessible.
You can divide this journey into steps:
Find a hematologist in your area and ask any questions about sickle cell disease. I think it is very important to get the information from the right sources.
Look for a community-based organization that focuses on sickle cell disease where you can go with all your questions.
Try to build a network of other parents, doctors, warriors, etc. People who know exactly what you're going through and who understand what you're feeling and what you're insecure about.
When you have collected the correct information about sickle cell disease, you can search the internet for more details. This is deliberately my step 4, because if you do this first, you run the risk of only finding scary horror stories about sickle cell disease. It is very important that you are open to positive information, so that you can accept the disease more quickly and easily.
Realize that the acceptance process does not go 1,2,3. And that sometimes you need help from others. You don't have to do this journey alone because there are millions of people who are going through the same thing as you.
Be patient and respectful to your warriors. It can be your child, yourself, your partner, brother, sister, parent, boyfriend, girlfriend. Realize that the main character in this process is the warrior and he needs the best support ever.
Educate yourself on advocating, because it is important that a warrior has a good lawyer at his side. Someone who steps in when he cannot do it himself and someone who ensures that he receives the best medical care.
Sickle cell disease is a disease that affects not only the patient, but the entire environment. Make sure you have the right people on speed dial and that you are strong when they need you.
These are just 7 steps out of thousands, but it is important that you make a start and that you are and remain consistent. You can do this!
Which of the following sickle cell resources do you find most helpful? (select all that apply)
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