Preventive measures should be a part of every sickle cell care plan
The health risks are too great to wait for trauma to occur
For those who are unfamiliar with my previous columns, I often write about a recurring theme: the importance of preventive action in the management of sickle cell disease. I am a staunch advocate of identifying health risks and doing what I can to prevent them.
I take my health very seriously. I journal my experiences and constantly read to educate myself. Then I use that knowledge to decide the best ways to holistically manage my health, given my sickle cell disease challenges. It’s not easy, and not everyone has the capacity to do it by themselves. But that shouldn’t mean that their healthcare experience is diminished.
Instead, our healthcare system (I live in the U.K.) should prioritize a holistic approach for all patients, especially those with long-term illnesses.
In my opinion, holistic healthcare isn’t offered — or even considered — by the healthcare infrastructure here. I think this is a disservice to patients, particularly those with underlying conditions that affect every aspect of their lives.
Moreover, it is a disservice to our National Health Service (NHS). The cost of failing to fully look at a patient’s situation can lead to worse outcomes. In the long run, this costs more and requires more resources when setbacks occur. The NHS is currently stretched beyond its capabilities, and wisdom dictates that we must change our approach.
It seems to me that potentially lifesaving measures are considered only after a patient has suffered extreme medical trauma. And when that happens, not everyone survives.
A disastrous flight
I’ll offer an example of my personal experiences. I’ve previously written about the extra things I need to travel by plane. In 2019, I took a short, hourlong flight from London to Glasgow. Mid-flight, I suffered an extreme sickle cell crisis throughout my entire body. I also had acute chest syndrome, a frequent complication of sickle cell disease, due to the reduced oxygen levels at high altitudes. I describe the experience as the worst crisis I’ve ever endured.
I landed in the intensive care unit for weeks. I was extremely lucky to have survived.
Today, I have the necessary measures in place to have oxygen during flights, which I am grateful for. But I have to wonder: It’s basic science that the sickle-shaped red blood cells in sickle patients means that on a normal day, the body receives reduced oxygen. If you compound that with the environmental change of high altitudes and less oxygen in the atmosphere, wouldn’t it be unwise to not make oxygen available to sickle cell patients as a preventive measure, before a sickle cell crisis happens mid-flight?
Another example is my experience with transcranial doppler ultrasound (ultrasonography) scans. As a child, I remember having these scans frequently to ensure that no sickling was occurring in my brain. As I moved into adulthood, I stopped receiving these scans and there has been no replacement for them. Yet, the risk of stroke in sickle cell patients remains unchanged. That means there is no barrier of protection or proper monitoring for the risk of stroke. The only way for us to know about it is if it happens — which, in my opinion, is too late.
It doesn’t have to be this way.
Medical teams should be given the resources they need to conduct appropriate scanning and to assess the risks for each patient. The approach should be tailored to each individual’s needs. Then action can be taken to mitigate risks before they progress to serious outcomes, such as death or long-term damage.
To me, it seems like we’re taking a gamble with the lives of sickle cell patients. Let’s do better.
Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.
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Comments
Dee Dee
Mary, you make a valid point about supplemental oxygen for use in-flight. I travel to the west coast of the US annually for an extended period of time and rent an oxygen tank from oxygentogo, to ensure I have supplemental oxygen at altitude. It's such a bore but like you say, it's a preventative measure. For those who don't know here is a like to the Civil Aviation Authority's advice about flying with sickle cell disease: https://www.caa.co.uk/passengers/before-you-fly/am-i-fit-to-fly/guidance-for-health-professionals/haematological-disorders/#:~:text=Sickle%20cell%20trait%20does%20not,days%20following%20a%20sickling%20crisis.
Another preventative measure others can take, is with regard to air conditioning environments, also living with sickle cell I won a case to do with exposure to unregulated, air conditioned environments in the UK.
I have learned that for me, during winter months and when flying my additional protection is decent thermal clothing; I'd rather have excess which I can remove than not and I make it a point when flying to get my GP to write on the airline form about not exposing me to an extended cold environment, like some airlines seem to do. I have been on flights where I have heard other people complaining about the cold, but they don't speak up, but I've learned to speak up.
I view this now as educating other people.
Dee
Jacqueline Medler
Hi Shaniqua, Im sorry to hear about your experiences which is horrible. I'm from the USA and I have had several experiences to be noted. The doctors need to learn more about caring for a SCD patients but we need to be equipped to give them information on h ow to care for us. I try to come equip with vital information and a positive attitude whenever I visit the ER. Thank you, Jackie!
EleanoR A.
Very good information, Mary. Prevention is always the way to go.