Resources For Our Sickle Cell Warriors
It is hard to live with sickle cell: the constant pain, the frequent pain crises, the infusions, and the hospitalizations.
To better support our friends living with sickle cell disease, our Sickle Cell Team assembled some resources to help make sickle cell “suck a little less.”
I feel like I am constantly having pain crises. How can I manage my pain?
Pain crises are such a regular part of sickle cell disease, and it sucks. They can come on without warning and cause severe pain and other complications. You should definitely talk to your doctor regularly about your condition and let them in on how you are feeling. They might be able to help you come up with a game plan to manage your condition.
Generation S’s My Sickle Cell Game Plan Tool is a great resource to help guide you. As they say, managing sickle cell isn’t easy, so it helps to have a plan! It’s a quick 9 question quiz with tips on how to manage sickle cell.
Another great way to manage your sickle cell is by tracking your pain. WebMAP Mobile is a great app that is designed to help you cope with chronic pain. It tracks pain, mood, sleep, activities. Tracking how you feel can help you identify what activities make you feel good and what triggers pain.
I just turned 18. How do I transition my medical care to an adult team?
Transitioning can be scary, especially if you’ve seen your pediatric hematology team for most of your life. But you’re not alone! Your Streetlight team is here to support you through it – we can continue to see you in adult care! The biggest change is of the amount of input and responsibility you’ll have. As an adult, you’re expected to take charge and have more responsibility over your health.
The people at Nemour’s Children’s Hospital in Orlando have some tips and tricks for sickle cell warriors looking to transition to adult care. They name some of the things you will need to know for yourself as an adult, like what medicines to try for mild and moderate pain at home or how to decide when to go to the office, a sickle cell treatment center, or the ER.
I want to go to college. What should I know going into this, and what are some resources available for me?
Going off to college is so exciting, but can be a little nerve-wracking when thinking about moving far away from family, friends, and your health care team. Here are some suggestions on how to plan your care around school stresses and health care communication.
College can be expensive, but there are scholarships specifically for people living with sickle cell! From $1,000 to $10,000, scholarships can make college affordable. Check out these scholarships!
It can be hard to hold a job with my pain. What is Social Security Disability?
Chronic pain can get in the way of all sorts of things, especially a job. The Sickle Cell Information Center has an article on Qualifying for Social Security Disability with Sickle Cell Disease. The Social Security Administration (SSA) offers aid to folks who are unable to work or participate in typical childhood activities, and sickle cell disease is listed as a qualifying condition. This means you could be eligible for monthly payments for your medical bills, paid medication, childcare, rent, travel expenses, and any other daily living needs!
You can also always talk to your social worker about any help you might need. They have access to a lot of different resources that can help you financially.
I feel really alone, and sometimes I feel depressed. How can I get help?
Sickle call disease can make you feel all sorts of emotions, and it’s totally normal to feel alone, frustrated, and maybe even a little hopeless. It can be hard when you feel like sickle cell is taking over your life. But you are not alone! You can talk to your friends, family, health care team, and Streetlight friends who all want to support you and help you overcome the challenges of sickle cell. But sometimes, it can be helpful to talk to a stranger by calling organizations that specialize in mental health help.
If you ever feel out of control, stressed, depressed, or even like you might hurt yourself, here are some people you can reach out to who can help.
Alachua Crisis Center
The Alachua County Crisis Center offers 24 hr/day crisis and suicide intervention phone counseling. Many of our Streetlight volunteers have served as phone counselors! This is a completely free resource, available any time.
Call 352-264-6789 to reach someone.
Crisis Text Line
If making a phone call feels too intimidating, you can text the Crisis Text Line if you need some emotional support! Crisis Text Line serves anyone, in any type of crisis, providing access to free, 24/7 support via text. A “crisis” doesn’t just mean thinking about ending your own life. It’s any painful emotion and anytime you need support. This resource is also free, available any time.
Text HOME to 741741 to reach a Crisis Counselor.
For more information, you can visit the Crisis Text Line Website.
How can I meet other people with sickle cell?
There are so many other teenagers and young adults living with sickle cell and going through similar things as you. Here are some different organizations to get connected with!
We invite you to join our private Streetlight Discord Server, a chat group that allows us to connect any time, any where– whether you’re at Shands, or back at home. The Discord emerged out of the Streetlight Gaming League to connect patients across different gaming platforms, and link up on other consoles like PS4, PC, Switch, iPhone games, and on any platform you use! We also have chat and voice channels to discuss any of your interests, from arts and creativity, TV and movies, and even pets! You can download Discord on your iPhone, Android, Tablet, or PC, to stay in touch with the Streetlight Community and meet other people with sickle cell!
If you want to join email firstname.lastname@example.org or ask a Streetlight volunteer!
Sickle Cell Disease Association of North Florida
Phone (352) 393-2781; e-mail: email@example.com
The Sickle Cell Disease Association of North Central Florida/Gainesville Chapter is a non-profit organization that designs activities to lend economic, psychological, social and emotional assistance to individuals and/or families affected by Sickle Cell Disorders.
- They provide referral services for medical care, screening, blood donations, support groups and summer camp.
- They direct services for counseling, community outreach, educational programs, special events and Christmas activities.
- They organize the 2k Sickle Cell Awareness Month in September.
They mainly communicate through the SCD Facebook Page.
Sickle Cell 101
Sickle Cell 101 is an organization that specializes in sickle cell education for individuals impacted by sickle cell disease and sickle cell trait. They feature the “Sicklepedia,” the Online Sickle Cell Encyclopedia, that is organized by certified educators and experts.
Follow them on social media to learn more, ask questions, and get connected with other people who live with sickle cell! @sickle101
Generation S educates, raises awareness, and shares stories of those who have been affected by sickle cell disease. You can get connected to the sickle cell community, receive event invitations, and hear from others like you. To join Generation S, click here.