I would answer, it’s not just one concrete tangible item of support, but it would be a better social infrastructure for people who live with chronic diseases to address issues of lack of transportation, lack of insurance, lack of housing. These things that are social determinants of health that negatively affect healthcare outcomes. Those are the greatest resources that could help me, and then other people who live with this disease.

I wish we could find a knowledgeable doctor that treats sickle cell disease. You don’t feel like a guinea pig when you visit his clinic or office, because they don’t have too many patients or never had a patient with sickle cell disease. I wish sickle cell disease had a network of physicians and healthcare members that are very knowledgeable about sickle cell disease.

Oh, my ideal support would be a sickle cell group where a lot of groups … We meet in person. It’s a support system. I’ve been trying to find something like this for a long time. They used to have one, but they canceled it. They said it started a lot of problems which is … I mean people need it. I feel like you can have those people in your life that understand you versus people who didn’t even hear about sickle cell. They don’t even know what you’re going through. They don’t feel what you feel. A sickle cell group, a sickle cell circle, I mean that would be amazing. I’m still on the lookout.

So my ideal resource would be probably like a forum database or block site to where patients can go and just say how they feel. Something like that would be good, and I guess that would come in a form of an app or an organization. I would love for researchers to create a database like that, so where patients can go and just speak their mind and give their own account of how this disease has impacted their life. So I think there are some that exist out there. I just have to check into that, but if they can create more of that, that would be good. Just more awareness is always better. Prevention is always better than cure.

I wish that there was a financial resource that we could access, if not consistently, then at least at times when she is unwell and has to be hospitalized. It puts a financial strain on the family situation. And for our specific family, there isn’t any financial assistance for that, so that would be useful. That would be most useful. Secondarily, one of the things that is actually already in existence is that she goes to summer camp with other children who have the same condition as she does. And I wish that there were, not year round necessarily, but camps, or groups that she could access at other times in the year, other than just summer, whereby she would feel supported. And just have a good time, without the focus being on her health condition. Just have a good time. I think there are enough times when she experiences pain and discomfort, that I really wish there was a resource that could bring joy.

What organizations may be helpful with me in my situation are organizations that can assist with my medication. Some of my medications are very costly and I have to reach out to organizations for assistance because my insurance does not cover the cost of my medications. Church organizations. Of course, having prayer groups can be very vigilant. Just having a strong faith base.

I would say an actual cure where you don’t have to take pills for the rest of your life. You don’t have to be on pain medication for the rest of your life. So an actual cure, as in go in, get a treatment for a set number amount of days, and then I can walk out of that treatment facility without sickle cell anymore. That will be a dream come true.

I think my ideal… I mean my ideal support resource would be a good support system. When I say good support system, we have a support. We have a support group that meets once a month, but I really appreciated the… How they’re aware of being able to connect more with people in my support group, or be able to connect more with people who have sickle cell and be able to talk, to share my experiences with them and learn from their experiences. In a way, this would help me get to cope with my disease more and not being able to worry about what I’m going through and being able to share with them to what’s happening. So I think a better network of how I can connect to other people who are living with sickle cell.

The main resource that I wish I have is government resources because we need to have more awareness of sickle cell. I feel like we don’t have enough resources and the government or in hierarchy to help us with battling sickle cell. So any resource I could get right now, it’s a nice resource with the government.

I wish I had the social worker back in my younger days that I didn’t have. I have one now, but having a social worker, they can lead you to other people who been this or help with this. It definitely would’ve come in handy back in my younger days, I would definitely have to say a social worker.

I wish had more support for things, like I mentioned earlier dental. I do have a great vision, optical… ophthalmologist. But I wish there had been supports for that. And also, when I had gone through Social Security Disability, I wish… I’m finding out about it now, but there are programs to help readjust careers and have organizations help you find careers that you can do from home or go get trainings. I’ve done a lot of that, actually, with the resources available to me, but I wish there had been more emphasis on keeping you not only alive, surviving, but also how patients could thrive. I think that sometimes expectations were very low for sickle cell patients because of them being a minority status and a rare disease. A lot of times, even when I was in college and graduate school, offices of disability would sometimes not know how to accommodate for this disease, and they would not be open to hearing from the patient itself. So, there’s a lot of systematic things that could be changed or tweaked. I’m hoping that younger people now are able to navigate a little bit better. Because there was so much ignorance and not a lot of education, it’s still not a widely known thing. When I heard people in the community talk about it, they often don’t know that it’s a lifelong disorder. There are some more medications now that have come out specifically for sickle cell, but that has been a long, tedious battle just to get attention in the medical community. Many, many patients, organizations, and caregivers have had to go to D.C., had to rally their state and national representatives in Congress to get attention to this disease and make sure that there is research being done. Because it’s something that a lot of the medical community considers to be a throwaway disease, they mean that patients require a lot of resources, and there aren’t a lot of return on investment with energy invested because even as they’re being treated in the maintenance program, you can become worse. So, it is required, often, healthcare to be robust, and it has not been such in the past, and therefore patients like myself have suffered. Some patients still die in hospital rooms, which is very sad, simply because they didn’t get to the hospital in time. Or even when they’re in the hospital, they’re not getting pain managed appropriately, and people aren’t checking for heart rates and things like that. Well, not checking. They do check your heart rate, but they don’t look at the fact that you could be in a serious, life-threatening condition. Oftentimes they just deny that and just think you’re drug-seeking, which is really a racist concept that people who are pain are there to receive drugs. Yes, we would like our treatments and our health to be better, so we would have to have interventions. Unfortunately, taking Tylenol and ibuprofen don’t go very far when you have literal blood cells clotting in your bones and in your arteries and things like that.

One resource that I wish I had, and I don’t know, maybe it’s just me, but I wish I could get treatment or let me phase this better, I guess treatment at home would be, I don’t know if that’s an option, but that would definitely be something that I would want for myself or anyone with sickle cell, to be able to get your treatment at home, to get your relief at home, to be able to be treated at home. If anything, that would be my number one thing. Other than that, I would think of a plan of care, something to let other doctors know whom aren’t familiar with sickle cell disease to know what works best for you and this is what work best for you and this is the plan you should go by when I come into your emergency room when I’m sick. That would be something and I know that’s already in place, but that is something that is huge and just recently come up that maybe my mom didn’t know when she was raising me for sickle cell, but I know now raising my son with sickle cell. Yeah, that would be it.

I actually prefer sources of individuals that I can speak with, and of course, they’re limited, individuals that actually are engaged or communicate about sickle cell itself. Just actually having more of a handy type of individual I can call and speak with regarding my daughter’s condition, the SC versus SF.

Maybe I haven’t been doing enough research, but I wish there were more books dedicated for Sickle Cell and herbal medicine. I’ve read about burdock root and yellow dock and sarsaparilla, but I haven’t seen a lot of information on which herbal teas or infusions I can drink every day to maybe stop my blood from being so sticky and causing pain crisis. Also, I wish that each hospital had like a physical group for that medical condition where we all meet and we workout or do yoga or some type of exercise. So, that would be really helpful.

Ideal resources would be more so for physicians in the ER and hospitalists, that they were properly trained or understanding what sickle cell is and how sickle cell affects the human body. I also think it would be helpful for a national organization, because I truly believe that the Sickle Cell Organization is not doing a great job of teaching individuals about sickle cell traits, how sickle cell trait can produce children with sickle cell disease. There’s like about 3 million people in the United States that have sickle cell trait and majority of them don’t know their status. And then, these children are born with this disease that is life threatening. And the parent is shocked. I really think that our schools, our universities, our government health departments need to provide information to individuals on sickle cell trait and the dangerous that it costs if you mate with another person that has the traits, because you have a 25% chance of every pregnancy of having a child with sickle cell disease if you have sickle cell trait. I think it’s also important that there are resources out there that the government hands out about the different types of hematological traits. For example, I have sickle cell SC, so C hemoglobin and beta thalassemia, all these other different types of trait disorders combined with sickle cell causes sickle cell disease. So it’s so very important that our government officials, our schools, our universities teach the next generation and also the current generation of what sickle cell trait is and what sickle cell disease is.