Sickle Cell Warriors


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Do You Clash with Your Doctor?

For those of you that are still at odds with your physician, here is some research from John’s Hopkins that might help to illuminate your doctor’s mind. Sickle cell patients often have bad relationship with their primary physicians, and this is as a result of baggage from the past, strained communication, and lack of understanding on the doctor’s part. How many times has your doctor not listened to your complaints? How many times has he/she ignored your suggestions? How many times have you had to switch doctors because one was not keeping up with your pain management? The list goes on and on, and finally, the good Dr. Haywood (who is a sickle cell warrior himself), did a qualitative study at JHU and linked the lack of trust that we have in the medical profession directly at the feet of whom it should belong—the doctors.

Faculty at the Johns Hopkins Berman Institute of Bioethics have published a study that shows, among adults with sickle cell disease, that unsatisfactory interactions with health-care providers in the past affect their trust in the medical profession more broadly.

“Our research serves as a reminder to clinicians caring for sickle cell patients that simple things like listening to their patients can go a long way towards nurturing trust in what has been a historically strained relationship,” says lead author Carlton Haywood Jr., Ph.D., an associate faculty member at the Berman Institute. The study is in the June issue of the Journal of General Internal Medicine.

…And because he has sickle cell disease, when he describes this challenge to physicians, it’s also a personal request: “We should be working together, combining my knowledge of how the disease really impacts me, with your medical and biological knowledge, to come up with the best treatment plan for me. And unfortunately, a lot of sickle cell patients don’t feel like their own expertise is being heeded.”

My favorite doctors are the ones that treat me like a partner and collaborator in this venture. They understand that I’ve been dealing with sickle cell all my life, and know the inner workings of my body. They listen to my recommendations and factor them in with their clinical and medical perspective. We work together to keep me as healthy as can be.

I know that many people haven’t been fortunate enough to find such a relationship with their doctor. Perhaps this new research will open the minds’ of the physician’s out there into treating us like PEOPLE.

Here is the full synopsis of the study.

About Author

Sickle Cell Warrior

Sickle Cell Warrior

Tosin is dedicated to perpetuating healthy and positive messages about sickle cell. Although sickle cell is a subject often taboo in the communities this condition is most prevalent, Tosin's message is that sickle cell is not something to be ashamed of and you can live a rich and fulfilling life with sickle cell. Sickle cell warriors are the most amazing people in the world, with a great fortitude for compassion, willpower and strength.

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  1. Vincent
    Vincent June 06, 11:01

    I have a good relationship with my hematologist, but when I go to the hospital for a crisis it’s a complete crapshoot. One doctor I had last year (day 2 of a severe crisis): I’m going to discharge you because “your lab results are fine” (what does that even mean!). Luckily a relative advocated for me; that night I developed an acute chest syndrome.

  2. Sickle Cell Warrior
    Sickle Cell Warrior Author June 06, 21:28

    @Vincent…your lab results are fine? GTFOH! Ain’t that some ish. But really, this is the ignorance we deal with. The sad part is that many times the docs think it’s just about the pain and fail to do a full comprehensive assessment. This is why many other problems ends up missed…

    It’s great to have an advocate when you are sick. Your relative pretty much saved your life.

  3. paul barton
    paul barton June 11, 01:52

    Only today I received an e mail from lady – this time with serious rheumatic issues – who had seen some great benefits from just altering her diet. The doctor’s response was to decry any potential benefit and tell the lady that she was a fool for believing diet could do anything for her condition. We need medical doctors who are both compassionate and understanding and prepared to embrace such things a dietary change.
    I could go on about this for days – it makes me so angry.

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