For most of my life, I hid the fact that I have sickle cell disease. People only knew about my health if they needed to know. In other words, the only ones I could talk to about it were my immediate family members and doctors.
This was not ideal growing up, because I wanted to ask so many questions. But there weren’t many people I could speak to about it.
My understanding of sickle cell at a young age was limited. I only knew that I frequently experienced pain and fatigue, and that I had to live a certain way to prevent the pain. This made me feel isolated because I was going through so much but didn’t know what was happening or how to deal with it.
I remember feeling so alone and thinking that no one understood what was happening to me. I wanted to get many things off my chest, but those around me didn’t understand, or they didn’t know what advice to give.
As I got older, my list of questions grew longer. In a quest for more knowledge, I took my questions to the internet. I had to do my own research and was happy with what I found.
Google searches led me to several internet pages, online support groups, and forums filled with sickle cell warriors across the world and from all walks of life. For the first time, I felt like I truly belonged and that I was part of a large community.
I could ask all the questions that came to mind and was overwhelmed by the number of informative responses. These sources of information positively influenced the way I viewed myself, and they changed the way I looked after myself.
I’m happy to announce that Sickle Cell Disease News has created a new public forum for these types of discussions. This is a space where those of us who are affected by sickle cell — including patients, caregivers, family members, friends, and significant others — can sign up, share information, comment on messages about daily living, and encourage one another.
Topics discussed include “What advice would you give to a sickle cell warrior?” and “What is the most effective medicine/treatment you use or have used to date?“
If you are affected by sickle cell disease, we would love for you to get involved. Check out our forums and let us know what you think!
Note: Sickle Cell Anemia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Anemia News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to sickle cell anemia.
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