Facebook Page Group Newsletter
First of all I would like to say welcome to all the new members!! The community has grown a lot by leaps and bounds and I’m really happy that you have found us in our little corner! As of today we are 6400+ members strong and officially the number one largest online sickle cell support group. It is because of all of you, who have been so positive about supporting the members of the community, keeping it very respectful, and sharing the page with your friends and family members. So I really just wanted take the time to thank you so much for all your support, comments, advice, questions, participation, and love. As I always say, we are all in this together!
I know that having a chronic medical condition like sickle cell can be quite challenging to you, your friends, and your loved ones. That is why the page was created: so that we can get together and stop the isolation and silence that we often face. Feel free to ask any question that you want about SickleCell and comment on any of the posts that are made. The more that YOU participate the more that WE all can learn from each other.
I do however, want to extend a note of caution. Most of the stuff that you would read on the page are opinions of people that are dealing with sickle cell and have similar experiences to you. As with anything you read online, you should exert some discretion and intelligent thought process before incorporating everything you read into your life. Our illness affects us in different ways and our bodies are unique, just as we are unique. Just because something worked for Mary doesn’t mean that it’s going to work for Jane. My greatest fear is that someone reads something on the page and ends up making the wrong decision for their health and their body which leads to irreparable damage to themselves or harm. So please, I beg of you, use some wisdom in deciding what to apply into your own regimen.
From the onset, the spirit of this page has always been one of support, respect, honesty and love. We are all here to help build each other up. I know that sometimes it can be frustrating dealing with the various dynamics of sickle cell, however, this does not give you the license to take it out on any of the community members. Even if you disagree with the original post, you can still maintain a level of respect. We are not here to sit in judgment of one another. If you open yourself up to the opportunity of learning, you will find out that even if you disagree with the poster, you’re able to take away something positive from what they said.
Although we do our best to moderate and delete inappropriate posts and comments, sometimes we do not catch them all. Please avoid using swear words and offensive language on the page. Venting is totally fine, just not at each other! I am able to ban users that are deemed disrespectful, offensive, and do not follow the rules of the community. This feature has been rarely used in the past, but disrespect and abuse of the page or members in any way, shape, or form will not be tolerated.
Through the course of this page, I have been fortunate to meet two very intelligent and passionate sickle cell advocates who have been helping with the website, SickleCell Warriors foundation, and with the Facebook page. Without them all these projects would probably have fallen to the wayside; (as you know, having a chronic medical condition often is just the only thing you can focus on). Without these two, this page would have lost its traction years ago. I want to thank them for their hard work and help through the years.
The first is Dr. Lakiea Bailey who is possibly the most astounding source of scientific information about SickleCell that I’ve ever come across in one person. She has a PhD in hematology and microbiology, a brilliant mind, and is the epitome of a Warrior. Lakiea started helping out with the site last year. I often divert the more mind boggling medical and scientific questions to her beautiful mind, so you may get emails from her. Although we are complete opposites, we balance each other out perfectly. She is the yin to my yang (if you can ever say that about another woman;) and I trust her advice and judgement unequivocally.
The second moderator is Nina Yeboah. Nina joined the team this year when we were overloaded with our massive workload. She has a Masters Degree in Public Health with emphasis in Epidemiology. Nina has been very active in the sickle cell advocacy arena and involved in several projects through the years (several of you probably know her)! Nina is a researching goddess… she can find information on almost anything and is a knowledgeable fountain of information. She has been able to dig up posts that I have even forgotten that I wrote about and find answers to questions that have stumped me!!! Nina has been instrumental in keeping the page up and running and is often the first one to respond to almost every single post.
Because of Facebook’s new format, you may not see the posts by everyone unless they are your friend on FB, or they have been acknowledged by a moderator first. So if you do post and don’t see it immediately; don’t post again —-it just means that we have to approve your comment before shows up. If you have been a long standing member, your posts should automatically show up. You can see everybody’s posts by clicking the Show All button on your Facebook header.
If your post is something that would resonate with a large number of people, we often just highlight the post so that everyone in the group can see it. We try to keep the page fresh and interesting by choosing a selected question of the day. If you noticed that one of the moderators or myself say “posted up”, it means that your post has been chosen to be the question of the day or highlighted. Usually by refreshing the screen you’ll be able to see the new responses.
Here’s a tip; you have a higher chance of being selected if your post is easily understandable and properly spelled (Pet peeve of mine). We generally like to keep the original context as much as possible, limit editing, and still keep the integrity of the page. Small errors are easily fixed but too many and it may not get re-posted. If your question was not chosen, and after you’ve received some responses you still want additional answers from the larger group, you can ask for it to be posted as the question of the day or highlighted.
Please refrain from posting direct links to something for sale that has been unverified by the moderators. I know that when you find something that works great for you, you want to share the good news with the world! But many of the people with sickle cell do not have a lot of disposable income and I do not want us to be a target for scams and fraudsters. You can talk about your personal experiences with a product or remedy, but DO NOT post the direct link unless a member of the page asks you for more info.
Unfortunately, this has already happened to a few people on here which is why I am writing this article. Just because something is linked or posted on the page does not mean that it is legitimate. I always refrain from putting my personal stamp of approval on anything that I have not tried myself. So if anybody tells you that this is approved by “SickleCell Warrior” please do not believe them. When in doubt, ask me via email or you can also post a comment on the page. Please practice safety and discretion with who you send your money to or share your personal details with. I love you guys and I do not want anything bad to happen to any of our members or anyone affected by sickle cell or influenced by this community.
We are still trying to work on our official logo which will be attached to the cruise and all events that SickleCell Warriors does in the future. If you are an artist or graphic artist and would like to help us out; please send me an email with your ideas.
Okay this is getting a tad long so I’m going wrap it up. We generally wade through about 50+ emails a day. So if you email us you might not hear back for a few days. As a result, the Facebook page is often the fastest way to get feedback immediately. The website is used in conjunction with the Facebook page. So if you do not hear back from anyone, or you have a question about a sickle-cell complication or something that you feel we may have already discussed, you can do a search on the website by typing the keywords of what you want into the search box that’s in the upper right-hand corner. We often do get a lot of repetitive questions, so I will do my best to try to compile a list of the most frequently asked questions and the threads where they have already been responded to.
We do want to learn about every single one of our 6200+wonderful Warriors! If you would like to be featured on the website as a Warrior in the Spotlight, then go here, scroll down, and follow the instructions.
The SickleCell Warriors Cruise to the Bahamas is still on and going to happen July, 2013. You can bring your friends, family, or anyone affected by sickle cell. It’s just an opportunity for us to meet each other in person in a fun, relaxing environment. There will be opportunities for learning more about sickle cell but it’s not going to be dry and boring. If you plan to come, start saving your money now; you’ll probably need about $500 per person (not including flight to FL). We are still working on the details but for now just work on getting your passport and start saving your $$$. Once we have all the details solidified I will write an extensive post and a video tutorial that will show you how to get signed up for the cruise. Hope you can make it!!
In conclusion: I adore you guys and love that you are a part of this community. We are all here to learn from each other and it’s important that all of us maintain a certain level of respect and camaraderie. Please do not post external links to items that are for sale that have not been verified by one of the moderators. Use the website in conjunction with the Facebook page and all our other online media listed below. Save up and plan to attend the Cruise next summer.
Stay warm, avoid stress, drink a lot of water, stay healthy, but most of all stay blessed.
Love, love, love!
aka Sickle Cell Warrior.