Knowledge Is Power

Networking is the key

Over the past few weeks, I have met so many new people within the sickle cell community. It is wonderful to see how many parents and warriors are committed to our sickle cell community. Networking is extremely important to us as individuals. Usually, we network for work, school, and other activities. I never thought that I would network so much for the sake of a health condition.

Do you know the saying “you are never too old to learn”? In my family, we say it quite often. And as I get older I notice that it really applies. In March, I decided that I would start actively networking again, visiting events, and organizing events. A very nice activity that made a huge impression on me is the Leadership summit of the Sickle Cell Consortium.

Positive energy

It was an event of 4 days during which we were able to attend presentations from various organizations that are committed to the sickle cell community. After every presentation, I thought “WAW! I did not know that yet!"Every time I find out there's so much I don't know yet, that makes me really excited for the future of our warriors. Because everyone who now actively participates and conducts research makes a huge contribution to improving the quality of life for our warriors.

When you attend such an event you feel that positive energy and that gives hope. I am hopeful that in a few years we will be able to say “We did it!” I think it is important that we as a sickle cell community should encourage each other to attend these events, organize them, and share what we have learned with each other. As sickle cell ambassadors, it is our job to share this obtained information with the community.

We need to share it not only with the sickle cell community but also with the doctors, nurses, families, and teachers, anyone who comes in contact with a warrior in any way should know the power of working together and doing together. Because only if we do it together we can go far.

Getting involved with the sickle cell community

What do we do with what we learn? What do we do with the things we know? Do we keep it to ourselves? Or do we share the information with others? How do you try to contribute to the sickle cell community? You can contribute in several ways:

• Look for events, there are many virtual events so you can easily attend an event from your home
• Actively network with other ambassadors who are also committed to the community
• Ask questions when you don't know something, so you learn something new
• Participate in research studies
• When you have information share it with the community so you can help others
• Use the internet to catch up on the latest developments
• Stay curious!

I believe that, just like me, you will gain hope as you take in this information. Every family that has a family member with sickle cell disease is looking for hope and guidance. We all only want one thing: that our warriors can get healthy! That they are no longer in pain. That they can have a “normal” life. So if you can contribute to this I would say “What are you waiting for?”

And yes! We can contribute by actively participating in research studies and events and by sharing this information as much as possible.

Where to look and what to look for

I always search via Google, Facebook, and the Whova app. Through these 3 platforms, I meet more and more people and organizations that are committed to the sickle cell community.

What should you look for?

Look for the words:

• Sickle Cell Congress
• Sickle Cell events
• Sickle Cell summit
• Sickle Cell Consortium
• Sickle Cell community centers
• Sickle Cell Activities
• Sickle Cell Webinars

These are just some of the terms you can enter. And of course, you can also use hashtags via social media. You can then search for different hashtags such as:

• #sicklecelldisease
• #sicklecellawareness
• #scd
• #sicklecellevents
• #sicklecellwebinars

Last but not least

• In addition to the internet and events, there are also many books. I have often shared titles of books that help me enormously when I really need them. Last weekend I again bought 2 new books via Amazon. These 2 books are guidelines for parents and caregivers, but also for young adults who are looking for practical information and tools.
• Living well with Sickle Cell, A handbook for parents and caregivers by Andrea M Matthews (Children's Sickle Cell Foundation, Inc)
• Hope and Destiny Jr. The adolescent's guide to sickle cell disease by Lewis L. Hsu, MD, Carmen C.M. Rodrigues, RN, and Silvia R. Brandalise, MD. (revised second edition)

If you use these tools I'm sure you will learn more and more. Good luck with the journey and share this information as much as possible!