Sickle Cell Disease

Do You Trust Your Doctor? #sicklecell


Kyle’s story sheds light on the need for people living with sickle cell disorder to trust their doctor. Kyle was hospitalized over a thousand times. For many sickle cell patients, hospitalizations are inevitable. As a result, sickle cell patients and their families should research their medical professionals and find the best specialists who will give them the care they need.

Yesterday, I shared with my readers the State of Sickle Cell 2016 Report from the American Society of Hematology. I’ll share several statistics from the report throughout the month. One statistic I want to discuss today is: “In a national survey, only 20.4 percent of family physicians reported that they felt comfortable treating people with SCD.” Wow! 

Do you believe a patient/provider relationship is the key to better hospital care for #SickleCell patients?

Sickle Cell and physicians #30forsicklecell

Parenting a child with sickle cell, I understand the struggle. Anytime she feels sick I can get an uneasy feeling. I may even question myself because I fear the illness could lead to a pain crisis. Instead of being fearful, it is important to develop a good relationship with her doctors, so we can prevent pain-crisis from ever happening.

About a year ago, my daughter wasn’t feeling well, it seemed like a virus and not sickle cell related, so I called her pediatrician’s office, but the office was closed for their annual Christmas party. As a result, I took my daughter to a new pediatric Urgent Care Center. After, I completed the paperwork, and the doctor read that my daughter had sickle cell, then she told me she could not see her. At least she was honest. She advised me to travel 30 minutes away to her Hematologist. Then I learned, even when the matter is not sickle cell related call her Hematologist. Let him or her know what is taking place. Thankfully, it was not sickle cell related. The lesson taught me to always try to stick with the same healthcare professionals who know my daughter, so she receives care from professionals who have followed her health over the years.

Following the experience, I have actively worked with her doctors to make them feel more comfortable treating her medical needs.

6 Tips That Will Help You Trust Your Doctor?

  1. Partner with them and let them know you are looking forward to building a relationship. Let your guard down and be open about your medical needs as a patient or as a caregiver.
  2. Go to appointments regularly. 
  3. Share what has worked in the past to help overcome a similar health concern arises.
  4. Follow the doctor’s treatment plan.
  5. Keep your doctor informed of the changes you experience.
  6. Keep a medical diary/journal.

This statistic will change when:

  1. More doctors receive specialized training for sickle cell disorders.
  2. More motivated medical students who want careers as sickle cell hematologists.
  3. Emergency rooms and urgent care centers gain more training on how to better treat sickle cell patients
  4. More sickle cell health centers open up around the nation.

Reference:

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  • These are great tips that are practical and easy to do. I feel that we have to be our own advocate when it comes to our health. When doctors see that you’re serious about your health and knowledgeable about what’s going on I feel like they treat you differently. Thank you for sharing!

    Siobhan
    http://www.befreeproject.com

  • These are great tips. I think it’s important that we build relationships with medical providers that we see over and over to take some responsibility for our own health.

    LiveLifeWell,
    Allison

  • Joyce Brewer

    My son doesn’t have sickle cell, but he has asthma. When he’s having an episode it’s best if he sees the same doctors too. We know what works for him in terms of getting him back on track w/ steroids.

    • Thanks for commenting Joyce. It can be very challenging for parents to find a doctor they really like and feel comfortable communicating with. You and I have been very fortunate. I wish your family the best. Peace, health, and blessings to your son!

  • Markita @SweshFit

    Wow…I didn’t realize treatment for this was so difficult. My bro is a carrier and I’m honestly not sure whether myself and my hubby are, but glad to know there’s treatment (though not as available as we would like).

  • I actually had an exboyfriend who had sickle cell and I learn how serious this disease is. I will be honest this is one of the most low-key diseases people dont talk about enough but its effecting so many people and families. I see how people are uneasy because I feel there is a lack of further research or even education on sickle cell in the medical industry still…I agree continue to stick with your main doctor because it has to been someone who truly study this disease to help your family. Its sad but it is how it is right now.

  • To go to a doctor and hear them tell you that they don’t know how to treat you must be devastating. Thank you for sharing the knowledge, I’m taking it all in and learning so much. I wish sickle cell was discussed on a much larger scale.

  • Tyra

    This is so important! You have to have someone you can trust in your corner. I didn’t realize how serious this disease can be until recently. Great info!

  • Kasi Perkins

    Wow, I’m continuing to learn more information about sickle cell by reading your posts. I will definitely be sharing it with others. Oh, and it is so important to have a good relationship and trust your doctors, especially when you or a family member has a disease like sickle cell.

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