I would say the biggest resource is the Sickle Cell Disease Association of America because they are really the hub that can connect you to all of the resources that relate to sickle cell disease.

Supporters of Families with Sickle Cell Disease. Which is an organization, a nonprofit dedicated to the needs of the sickle cell community that covers the entire state of Oklahoma. It’s been a great resource for me since its inception on, I think 2007. I can call down and reach out to an advocate if needed and also can call and reach out to other members who are living in the same by sickle cell.

Some resources that I like are the clinical trials and the surveys regarding sickle cell, because I don’t feel like people take it seriously, especially in the medical community. And it’s not well known like other blood disorders, cancer, etc. I like participating in those things to raise awareness. I feel like that’s something that’s been lacking. I do like the sickle cell group that we have in Chicago, SCDAI, don’t ask me what that stands for. They do events and they put out a newsletter and I even found a job through they have a sickle cell mentor job opportunity. It’s those things that I really appreciate people doing. I can mentor a younger person with sickle cell. What I know now, other things is Facebook groups. Facebook groups, not as much because they talk a lot of negativity to want to commit suicide. They want to end it. I mean, it’s a really tough, it’s a struggle, definitely, but I want to live. I like life. I want to be … That’s just too much negativity in my life. I don’t need it. Always try to stay positive. But that’s about it from me. Okay.

Again, a primary resource is the doctor, the physician that’s doing the research on this, the hematologist that has done studies and everything like that about this. That is the person that I would conclude to be my most beneficial resource and help in guidance towards a stressful matter, like a crisis. I haven’t really found any apps or different websites or organizations that are friendly about sickle cell. It is something I would love to look into, but at this time I have not found any apps or anything like that. But the doctors give so much information that it’s like, that’s all I really need. Something medically proven and proven it helps in a situation like that, the most accurate information, and I feel like I can get that from a doctor. Yep. That’s it.

Without a doubt the resource I have found most useful to us in supporting our loved one has been a Facebook group specifically for people or parents or families with a loved one that has this condition. They are almost like support groups on Facebook. These groups have been very, very useful in terms of information and resources and support just in so many ways.

I think Sickle Cell 101, they have a lot of great facts on there on Instagram. I think that’s their Instagram name is Sickle Cell 101. And they give out pretty good information about sickle cell, the myth that comes along with it, things that you can do to improve your sickle cell life. And then also, it gives you new studies and treatments that’s happening out there.

So one of the key resources that I’ve found very helpful for me in terms of survival, has been being able to listen to Qur’an, being able to use the Calm app on my phone, just being able to relax. And also the support group from our local sickle cell support edition here in the Midwest.

My biggest resource right now is my doctor. My doctor let me know of every study that has been done and lets me know of what’s going on in the community. And also I get a lot of information online. I get a lot of information when I’m going through sickle cell group and everything. And I try to learn from everything possible that’s around me. I also use resources with my sister. I try to talk to her and see how she’s feeling, see what she knows and I just try and go through it that way.

The resources that are most helpful with me and my condition are my hematologist, my primary doctor. I do go to sickle cell conventions and online sickle cell services. I’m involved with several sickle cell Facebook pages as well as sickle cell email clubs. That helped me deal with my condition.

This would have to be the Sickle Cell Association of Texas Marc Thomas Foundation that originated in Austin, Texas, but serves in Houston, Dallas, and San Antonio. They have been, by far, the most … the most useful part of this whole journey with me.

Resources that have been helpful to me have been definitely my parents. Secondly, support groups like Kincade is a group here in Cleveland, Kindred Spirits. I did not attend their meetings a lot when I was younger, had I known about it, I probably should have, or would have. But I also was in a phase of my health, where if things were not bothering me, I would not be concerned about my health. I was in a very good, stable state for most of my twenties and started to have a lot of deterioration in my thirties. And now I’m 40 years old. So those supports are really helpful now because I have someone who’s an adult who is like a mentee or mentor relationship. Older people with sickle cell, I didn’t even know about older people with sickle cell when I was younger and I didn’t know, and get to meet many other patients except for a few summer camps I went to, I remember them having sickle cell support for youth, but I think it’s much better now because there’s more parental involvement. And also it’s seen as something not to hide. I think a lot of times in the past we were hiding our disorders and hiding our medical conditions, where now we seek out support. But yeah, my support group, even though I’ve only been recently going there, there’s information, you could hear from other patient experiences, which is really validating about how horrible you’re being treated by the medical field. A lot of times our pain is being ignored and there is a racial element that unfortunately means that people with this disease get less care just based on what they look like as opposed to what’s going on inside their body. So having social support is really important. Another resource that has been great has been the inpatient nurses. I’ve had the luck of when I am impatient with the hospital visits, I’ve had really dedicated nurses who actually care and are compassionate and really will go to doctors and let them know what treatment plans need to be changed, how you’re feeling. They communicate. And they are really been lifesavers in my life, truly. And then also just having friends, that is a big thing. Have social support, to have a way to de-stress from your day. I’ll also say exercise is a good tool.

In resources that I’ve found most useful regarding my condition; the internet and my physicians. Those have been my go-to. Definitely, any CDC website for sure, or also, there are some groups on Facebook I know that you can find supportive people in and someone to talk to. Definitely the internet, my physicians, and the support system I have within the sickle cell groups I’m a part of.

Three sources that I’ve used, not only my daughter’s hematologist-oncologist nurse, but also Facebook is a great extra resource for us. There are several Facebook, actually, groups of sickle cell patients. When it comes to medication, when it comes to therapy, treatment, mental health, I will say Facebook actually has been one of the best and…one of the best actual apps I have used and actually provides me information on when conference is coming up so that I can attend and educate myself along with my daughter regarding what sickle cell is.

I wish doctors and nurses were more useful. But sadly, the most useful resources to find out what I’m going through is the boards on Facebook. There are groups dedicated to sickle cell and the people on there, they share what they’re going through or what symptoms they’re experiencing or what this medication is doing or what their blood levels are, what their experiences are in this certain hospital. And that’s been the most informative thing I’ve found in a while to do with sickle cell.

I don’t believe there’s a lot of resources out there for sickle cell patients. I’m a part of a Facebook group and I get a lot of information and passing from Facebook groups. I find Facebook groups very helpful, and you can talk to individuals within the community and bounce ideas and experiences off of each other. So that’s why I believe Facebook for me has been very helpful.