More Life Hacks for Managing Sickle Cell

Tito Oye avatar

by Tito Oye |

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I previously shared some tips for managing sickle cell. If you found those useful, I have a few more suggestions that also may help.

Deep Heat

I find that when I am in pain, balms such as Mentholatum Deep Heat help. Balms that contain ingredients such as menthol and methyl salicylate are counterirritants and have pain-relieving properties. Once applied, the change in temperature triggers the dilation of blood vessels and promotes blood flow. Balms can also distract from the feeling of pain.

‘It’s too cold for fashion’

My parents told me repeatedly throughout my childhood that it was too cold for fashion — meaning that I should prioritize my warmth over my fashion sense. They constantly reiterated that cold weather can trigger a vaso-occlusive crisis (VOC), so I should always dress warmly. Sometimes layers of clothing ruin the look you are trying to achieve. Dressing warm is not always fun, but it is necessary.

Our blood vessels constrict in colder temperatures, making it harder for blood to flow and increasing the chances of a VOC. It is essential to stay as warm as possible! During colder months, my wardrobe consists of thermal vests, thermal leggings, jumpers, tracksuits, a thick winter jacket, hats, scarves, gloves — the full works.

Friends

Being open about my health with my closest friends is useful. My friends do all they can to ensure that I am as healthy as possible. For example, they remind me to take medicine and drink water and accompany me to appointments and monthly blood transfusions. I don’t feel as though I am carrying the burden of sickle cell alone, which is helpful. A problem shared is a problem halved, right?

I highly recommend speaking to the people closest to you about your health and letting them know what they can do to help you.

Have any of these tips helped? Do you have additional ones? Please share in the comments below. 

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Note: Sickle Cell Anemia 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 Anemia News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to sickle cell anemia.

Comments

Camille J Gladden avatar

Camille J Gladden

Thank you Tito for this. I am right now in crisis. I am 41 years old, diagnosed at 11 months. I have learned so much about how Sickle Cell Anemia affects me. Growing up it wasn't easy as my parents did not understand the illness and they being from the old school of the doctor knows best before informed consent was a priority. Their trust and reliance was in the hands of the doctors. Fast forward to my first science book and getting a glimpse into understanding my illness lead me down the path of medicine. Loving and appreciating my nurses I wanted to become one and now, so I am. However my illness is still there and will never leave. I am not mad, but understand how disciplined I must be to live a "normal" life. It can be a blessing and a curse, at times like this in Crisis mode it is a curse, but then helps me to evaluate what was I not doing that has caused a flare up? Then I refocus and have to take the same advice I give my own patients "take your medicine!" Haven't had a crisis since 2018?? It has been hard and a great life lesson. And as a nurse I wish I could do more, just haven't found out what. Advocating I would love to do as you are doing. But I feel to be more effective on the nurse's side of the bed, I need to update my knowledge medically, my confidence personally, and balance my time and energy more wisely. Thank you for this and for what you do.
Camille

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Bukola Ajibulu avatar

Bukola Ajibulu

Do you have any advice for parents taking care of Sickle cells children?

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Favour avatar

Favour

You can ask your doctor if your child can take hydroxyrea, its a drug prescribed by a doctor familiar with your child's case, you'll have to go through testings to see if your child is eligible for the drug first.
Also, allow your child do some chores by themselves, some parents tend to do everything for their children, which can be good.. But its not all good, cause your child will grow up and not know a lot about cooking or other things they are supposed to.. Also try talking to your child, don't assume you know all best. Thank you.

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Gabriel avatar

Gabriel

Wow I am pleased with your testimony.I can’t believe a sickle cell patient can live up to 40 years.
I was diagnosed at 3 years and now I am 26 .It is frustrating thinking that I can live past a certain age and that has taken a toll on my health .Thank you for sharing this .It has inspired me to keep taking my drugs and living healthy.

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