Tag Archives: Sickle Cell Anemia

Today, June 19th is World Sickle Cell Awareness Day. Sickle Cell Disease is an inherited blood disorder, with varying degrees of severity. To keep it simple, normal blood cells are round in shape, which easily passes through the blood vessel. People with SCD have sickle (curve) shapes blood cells which can get stuck and block up the passageway when travelling through the blood vessels. This can affect joints, muscles and/or organs. Many people who have the disease live their life with no health issues. While others, on the other end of the spectrum, are regular hospital attendees. Learn more about Sickle Cell Anemia/Disease. Or here.

Self-Care Tips:

Stay hydrated. Whether you are having a crisis or not. During a crisis, this is a must, even if you are hooked up to a Saline and 5% dextrose (this may vary) drip.

Stay away from alcohol. None of us will die without it. At the very least do not drink when you are in the midst of a crisis or feel one coming on.

Get rest & try to get and stay on a sleep schedule. Summer is around the corner and you may have plenty of activities planned. But you know your body. If you don't have the energy for a 6-hour hike, it's okay to say no. Try a relaxing picnic instead.

Ask for help. None of us can get by without help at some point or another. This could mean having a friend or family member collect groceries for you. Or even driving you to the hospital. That's what they are there for. The good and the bad.

Let your employer know about any health issues that may arise. Or contact your HR department. Sometimes it's hard to let people know about our perceived "weaknesses" but if an employer knows ahead of time, they may be able to work with you when you need to take time off from work.

Exercise in moderation, while listening to your body. If exercise makes you even more tired, lighten up. If you are having trouble breathing or recovering your breath, stop.

Have consistent contact with a healthcare provider. This may mean travelling a small distance but do not neglect doctors visit's! They are vital to keeping you healthy and living a full life!

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Till next time,

Nadia

Today is World Sickle Cell Awareness Day. This is a day of great importance to me because I have many family members who have the disease or the trait. Talking about Sickle Cell Anemia and bringing more awareness to it, will make a difference in research and societies understanding of it.

What is it? Sickle Cell Anemia is a genetic abnormality of the red blood cells. You can have Sickle Cell Trait and not have Sickle Cell Disease. Here is a chart that shows the difference between the two.

Who can get it? Who can pass it on? Unfortunately many people think only black people (native African descent) can get Sickle Cell Anemia. Not true. People of varying ethnic backgrounds can have the trait or the disease.

Who can pass it on the trait or the disease? Any person, of almost any race who has the trait, the disease or a combination.

Is it contagious? No, it's genetic.

Can people with Sickle Cell live a normal life span? Now days, yes. Having good medical care and taking care of yourself plays a huge part in this.

Why are people ashamed? So many reasons.  Some feel inferior or less than a "normal/healthy" person. Others are brought up, by family to be ashamed of the disease. There is a lot of misinformation & just plain ignorance about Sickle Cell Anemia. If you have questions or concerns, ask. Most people are okay with sharing their story.

Should you be ashamed? No, good or bad, it's part of who you are. You didn't bring on the disease, you were born with it.

What can you do to help those with it. Be understanding. Listen. Sometimes people just need someone to vent to. Sickle Cell Anemia is with them for life. Imagine how frustrating it would be if you had a disease that there was no a cure for. That you may possibly spend the rest of your life, in and out hospitals. That you may have varying degrees of pain, for the rest of your life. You'd need to vent to someone occasionally.

What can people with Sickle Cell do to make their lives more manageable. (These are just suggestions/guidelines. When your in pain and/or fatigued, some of these have to be put aside, for a while.)

Have a good relationship with your general practitioner and/or hematologist. This can be hard one, b/c many doctors have very little knowledge about Sickle Cell Anemia or think patients are drug addicts. But do your best, we sometimes have to be our own advocate.

Have a good balanced diet. This includes staying hydrated. If your body is dehydrated it will take longer for the pain crisis to pass.

Get adequate sleep/rest. If you were up all night in pain, and can only sleep during the day, do so until the pain crisis is over.

Exercise on a regular basis. Even if it's a walk down the block for fresh air, or a swim in a pool.

Have adequate pain medication/drug therapy when needed.This may be everyday or just during a pain crisis.

Knowing when to ask for help & when to get help. This may mean going back to your doctor for a new drug therapy or going to the ER, for immediate pain relief.

Here's a great animation to help you understand Sickle Cell Anemia.

Some more videos on living with Sickle Cell, courtesy of the National Institute of Health, here.

Till next time,

Nadia