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 20,600+ 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.
We generally welcome input from sickle cell warriors, caregivers, family members, health care professionals, teachers, advocates, and supporters. Although SCW welcomes all posts, using this site is a privilege and a choice. There are so many other great sickle cell websites out there that you can visit instead. Respect is a 2-way street. Respect the members, organization, and moderators, and we will respect you. We never had to have a whole litany of rules before because the community guidelines were basic common sense. But in the interest of full disclosure and transparency here are the DO’s and DON’Ts of using all our social media pages and the website.
We have over 8,600 members and have only banned 8 people. You have to be in gross violation to get banned, i.e. you have been warned by a moderator, violated probation, have had several members file reports against you, and lost the vote with the moderators. Most people on probation get watched for weeks before banning, and if they show improvement, the probation is lifted. A moderator can’t unilaterally have an axe to grind and ban you with no just cause. There is always a reason, a hefty paper trail, and in each of the bans, the members violated SEVERAL of the community guidelines, not just 1 rule. So no need to cry over ‘unjust treatment’. There is a process in place, the rules are there for a reason, and you violated the rules.
Good Manners and Respect Dos and Don’ts
- DON’T use “um,” be snotty to another poster, or make the argument personal
- DON’T attack people that believe in a seperate or different way than you do
- DO know the difference between differences of opinion and personal attacks
- DON’T post the same opinion over and over in the hopes of wearing other people down or “winning” a discussion; just move on
- DON’T post the same topic/thread/link over and over in the hopes of getting traffic to your item, this is called spam
- DON’T post unsolicited links to sickle cell cures, treatments, medications, or remedies. If a member or the topic question asks you what you are on, you may respond, but do not hawk your magic sickle cell potion here.
- DO link back to Sickle Cell Warriors any posts you copy from us or share on another page. It’s the courteous thing to do. Poaching and content stealing is disrespectful and rude. Attributing the post to Sickle Cell Warriors shows that you acknolwedge the time and energy we put into creating this page, and you support us. Plagiarism is not cool.
- DO email the moderators if you have any sickle cell related news you want featured or shared. This will be posted at the discretion of the moderators. Moderators@sicklecellwarriors.com
Starting New Threads Dos and Don’ts
- DO search for existing topics before starting new threads, otherwise, a moderator may direct you to a current post that matches yours
- DON’T use all-caps or excessive punctuation posts
- DON’T expect that everything you post will be published on the main page. We get a lot of content, and although we try to feature everyone, we may not republish every single post to preserve the quality of the page.
- DON’T expect that everything you post will be published immediately. We actually do have lives besides this page, all of us have sickle cell too, and will schedule or post your comment when we are logged in and feeling well.
Posting Messages Dos and Don’ts
- DON’T sign your posts, FB does that automatically
- DO use proper spelling, capitalization, punctuation, et cetera
- DON’T tipe lyk dis. It’s annoying to all readers, and being on your phone is no excuse.
- DON’T pimp your site, page, group, blog, or product, et cetera. Relevant comments are allowed within the framework of the discussion, but this community is not a billboard for your MaryKay cosmetics ad, hits generator, twitter runs, or your own gain. If you want a billboard, feel free to start your own group.
- DON’T post copyrighted articles; link to them
- DON’T post the same thing in multiple areas; pick a spot and go with it.
- DON’T post the same comment over and over again in an effort to get noticed.
- DON’T spam the page. All spammers will be banned, no exceptions
Warnings, Bans and Trolls Dos and Don’ts
- DO take any mod warnings you get seriously, you will only receive 1 warning before you get put on probation, so modify your behavior accordingly. The warning is usually a comment, email, or link to the community guidelines. We try not to ‘shame’ violators, so there will be no public post if we can help it. But if you start arguing on the moderator comment, the gloves come off. Your best bet if contacted by a moderator would be to acknowledge the mistake and rectify the behavior.
- DON’T bug the mods to remove warnings or bans, that makes you look whiny and wastes our time. Follow the community guidelines and stay off the radar in the first place.
- DO understand that using the page is a choice. We choose not to have poor quality content. By using the page, you are agreeing to our community guidelines
- DON’T start a boards on boards war just because you or your friend got banned. See above. We do not respond to flame wars, and will ban all members, no notice, no exception.
- DON’T feed the trolls. A troll is a person that comes on this page to start trouble or drama, and has nothing to do with supporting sickle cell disease. It’s best to ignore them, report them, and keep it moving. If you engage, you are just giving them what they want—drama.
- DO help us out and report trolls, flame wars, spammers, and troublemakers using the Report link on each post or send an email to firstname.lastname@example.org. All reports are taken seriously.
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! We can 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.
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” or “QOD”, 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. In the same vein, this community was created to be a safe haven for those affected by sickle cell. Bots, spammers, and scammers are not welcome. You will be banned if you post disrespectfully or links without discretion.
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.
If you do copy something that you found on this page, the website, or on any of our affiliated sites, please link back to us in the re-post that you make. This ensures that you are helping to grow the community, respecting the work everyone has put in to Sickle Cell Warriors, and supporting the group. We are open to collaborating with other groups, advocates, bloggers and sickle cell activists. We love bringing the community together, disseminating information, and supporting all those in the sickle cell community. If you would like to be featured and highlighted, please contact us via email.
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 at https://sicklecellwarriors.com 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 20,600+ wonderful Warriors! If you would like to be featured on the website as a Warrior in the Spotlight, then go to https://sicklecellwarriors.com/become-a-warrior/, scroll down, and follow the instructions.
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. Follow the community guidelines at all times. Use the website in conjunction with the Facebook page and all our other online media listed below. Save up and plan to attend the Sickle Cell Warriors Annual Retreat/Cruise next summer.
Stay warm, avoid stress, drink a lot of water, stay healthy, but most of all stay blessed.
Love, love, love!
Tosin Ola aka Sickle Cell Warrior.
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