Get Well Wednesday: How To Stop Sickle Cell Summer Flare-Ups

Tosin Ola, BSN, RN knows firsthand the challenges of living with sickle-cell disease. The practicing registered nurse, and mother of twin toddlers, launched the Sickle Cell Blog in 2007 to bond with others and share her experience living with this debilitating and deadly disease.

A short two years later, the sickle-cell advocate created an online platform – the Sickle Cell Warriors website – to broaden the discussion and give the community a much-needed voice. The educational site is designed to raise awareness of this complex chronic medical condition, address the serious complications of the disease, provide expert advice and research news, promote local events and much more. Also, the portal highlights “Warriors in the Spotlight” – people living with sickle-cell disease who share their personal experiences and are a source of inspiration for others.

To complement those efforts, Tosin’s Sickle Cell Warriors Facebook Page supports and encourages members to engage with others going through the same daily struggles. The leading social media channel has connected almost 17,800 members, making it the largest online group of people affected by this disease.

Tosin has partnered with Mast Therapeutics as a Corporate Liaison to lend her expertise, provide valuable insight and counsel the company from the disease patient and advocacy perspective. With an Associate’s Degree in Nursing (Oakwood University) and a Bachelor’s Degree in Nursing (University of Phoenix), she is working on her Master’s Degree in Nursing and Business Administration with an emphasis in Healthcare Management. She serves as an authoritative speaker, and reliable source to both media and book authors. Tosin lives in Carlsbad, California with her toddler twins and husband.

Summer fun means playing outdoors, cooling off in a refreshing pool and jumping on a plane to enjoy a family vacations. But for children, teens and adults living with sickle cell disease, these activities can trigger an extremely painful “crisis” episode.

“Crisis” is severely debilitating pain: sharp, intense, stabbing, throbbing, and more uncomfortable than post-surgical pain or even childbirth!  Worse, “crisis” can occur at any moment without warning.

Summer “crisis” triggers include:

* dehydration

* cold pool water

* extreme hot weather

* extreme cold air conditioning

* vacation air travel (e.g. high altitude)

* strenuous outdoor sports without frequent breaks to rest and hydrate

Tosin Ola answers your sickle-cell questions on the next page. 

What if you become a vegan, does that help with sickle cell?

Healthy eating will help you better manage your disease. Becoming a vegan is a personal choice, but when you eliminate meats from your diet, it reduces the amount of plaque build-up in your blood vessels, reduces the strain on your digestive system and improves your overall well-being. However, it’s always best to consult with your doctor when making changes to your diet.

What does medication do?

In terms of pain medication specifically, it helps to reduce your perception of pain, but you will still feel some pain. The underlying problem with crisis pain is the damage that is occurring in your body. The “sickled” cells are blocking circulation to parts of your body, which causes tissue damage. Over time, this can lead to organ failure and early death.

Is the pain worse then a gout flare?

Personally, I have not experienced gout. But I’ve heard about this pain through the Sickle Cell Warriors community, and that in comparison, sickle cell crisis pain is more severe. I can tell you that crisis pain feels like bones breaking.

What’s the cure for sickle cell I see on social media?

Technically, the “cures” – bone marrow or stem cell transplant – are not universal. That means you have to have a compatible donor and most people do not have compatible donors. Also, it’s risky, expensive and only performed by specialty centers.

What restrictions are there to fly when you have the sickle cell trait?

With the trait, it’s recommended that you walk up and down the aisle and do leg exercises every hour to prevent blood clots in your legs. With sickle cell disease, depending on how severe your sickle cell is, you can request wheelchair assistance when you check in for your flight, or use a cane if you have mobility issues.

You may require a portable oxygen machine if you have any breathing problems. You need to drink a lot of water, walk around and do leg exercises to prevent blood clots in your legs. Don’t forget to take your pain medication. It does take a lot more planning to fly with sickle cell disease because pain crisis can occur even when you are on the plane. High altitudes are one of the triggers of sickle cell crisis.

 Are babies diagnosed immediately at birth? Or, is it revealed over time?

Babies are diagnosed in the U.S. through the newborn screening program, a blood test done at birth. You will receive a notification from the state if your child has sickle cell trait or sickle cell disease. You can also request a sickle cell test from your doctor at any age.

How do you get tested for sickle cell? My dad had the trait.

You just have to ask your primary doctor to order it when you do your annual physical or whenever you see your doctor next. This test requires a blood draw.

Can you please clarify the myth that light-skinned people are less likely to get sickle cell than dark-skinned people?

This is a huge myth and not true. If you have blood running through your veins, you can have sickle cell trait or disease – especially if it runs in your family, since its hereditary. It doesn’t matter the color of your skin. Sickle cell is a genetic, inherited condition passed through your DNA. Whites, Latinos, Asians, Indians and South Americans can all have it – anyone from anywhere in the world can have sickle cell disease or sickle cell trait. It is not just a Black disease. It is a global disease.

Can sickle cell mimic other diseases?

Sickle cell symptoms are very distinct, and you can tell if you have sickle cell from a blood test. Because the chief symptom is a lifetime of severe, chronic pain, it is possible to be misdiagnosed. I always recommend talking to your doctor and if you are in doubt get a blood test to see if you have sickle cell disease or trait.

Will bone marrow transplant help, and does the age of the recipient and/or donor matter?

Technically, the “cures” – bone marrow or stem cell transplant – are not universal. That means you have to have a compatible donor and most people do not have compatible donors. Also, it’s risky, expensive and only performed by specialty centers. That said, if you do find a perfect donor match, I’ve seen recipients up to the age of 40 receive the transplant.

 How can I get tested to see if I have the sickle cell trait?

Ask your doctor to order the sickle cell test. It is a simple blood test, and you will receive the results in less than two weeks.

Are there different levels of sickle cell?

In terms of symptoms, some people experience mild symptoms while others become very sick. There are different types of sickle cell. The four most common sickle cell types are: sickle cell trait, sickle cell thalassemia, Sickle Cell SC, and Sickle Cell SS. If you have the sickle cell blood test done, it will determine what type of sickle cell you have.

Can a crisis happen during sex?

Yes, a crisis can happen anytime, day or night, especially during sex. We have talked about it a lot on the Sickle Cell Warriors Facebook page. The best suggestion is to make sure that you do not have any pain when you start, drink water before and during your encounter, and listen to your body. It’s OK to take a break if you need to.

Is there a specific sickle cell trait test that you can request from your doctor?

There is only one sickle cell blood test for both sickle cell disease and sickle cell trait.

How can you find out if you carry the trait? Is the test expensive? If you and your mate both have the trait, should you not have children?

You can easily find out if you have the trait by asking your doctor for the sickle cell blood test. Depending on insurance, the test may cost less than $50, and can be ordered with any other blood work that you need done.

If you and your mate both have the trait, just know that every time you get pregnant, you have a 25% chance of passing the disease to the baby. That means that each child that you have has the potential of carrying the trait or disease. If you’re interested in having a child, I would suggest you participate in genetic counseling. The counselor can help you explore your options.

I had never heard about sickle cell trait until I was told that my daughter had it. I’m not sure which one of us gave it to her. Can I request a blood test to see if I have the trait?

You can request a sickle cell blood test from your doctor at any time to see if you have the sickle cell trait.

Before I was married, we had premarital testing for sickle cell and STDs. Are these still done? Is it because so many of our babies are born out of wedlock that we don’t know if the other parent carries the trait?

Not every state does this premarital testing in comparison to a few decades ago. Most states don’t do it anymore. However, you can request genetic testing through your OB/GYN’s office, or your doctor’s office. Whenever possible, both parents should take the sickle cell blood test to determine if they carry the trait.

What do you say to couples who know they have the trait, and risk having children together?

Knowledge is power, and it’s always best to consult with your doctor. If you know that you both have the sickle cell trait, you should also know that if you decide to have a child together – your child may have sickle cell disease, experience a lifetime of crisis pain, and possible organ failure and early death. Make an informed decision together, and be aware that you have a 25% chance of passing sickle cell to your child during every pregnancy. This decision is not to be taken lightly.

My son is 15, and has the sickle cell trait. He plays basketball, and we’ve been told that he should be okay as long as he doesn’t overexert himself. If he does, would he have a crisis?

Only a small percentage of people with sickle cell trait have pain crisis. However, tell him to take frequent breaks, stay hydrated, don’t over exert himself, and if he is not feeling well, he should immediately take a break. It can be fatal in people with sickle cell trait when they overexert themselves, because even though he has the trait, he still have some sickle cells in his body that may cause blockage. So, he has to listen to his body.

What is the name of your support group?

The name of my non-profit organization is Sickle Cell Warriors. We are on Facebook, Twitter, and have a website www.sicklecellwarriors.com. Please join us online to learn more about sickle cell disease, hear from others living with sickle cell disease around the world, and share your voice.

My sister lives in Sacramento and is 57 years old. Not only does she have lots of pain from sickle cell anemia, she also has lots of pain from arthritis. She seems to have double the regular pain for sickle cell anemia. Can you suggest a dietary plan that could help her feel better? Thank you for the information on drinking water.

Please give your sister my warmest regards. She is a true Sickle Cell Warrior, so tell her to keep up the fight. I suggest she talk to her doctor to recommend a licensed dietitian who would be able to create a detailed diet plan for her taking into consideration her medical history. Sickle cell disease has taught me how to live a life of balance, especially a healthy balanced diet: limiting fatty and fried foods, eating less meat and processed foods, eating more fruits and vegetables, and drinking more water. I have noticed these changes have helped me a lot.

 What are the side effects of flying for someone with sickle cell trait or full-blown sickle cell?

Most people with sickle cell trait do not have negative reactions when flying. If they do, they might feel body aches similar to the body aches you feel when you have the flu. Taking over the counter pain medicine, such as ibuprofen, and drinking water might help with these body aches. However, if you have sickle cell disease, you may have a painful crisis during or after your flight. My advice is to pace yourself, rest, and don’t over exert yourself. Use a cane, and ask the airline for wheelchair assistance.

Remember to take your pain medication with you in your carry-on, drink a lot of water, and do your leg exercises or walk the aisle on the plane at least once every hour to prevent blood clots in your legs. If you have had acute chest syndrome (a painful, life threatening, sickle cell emergency that causes breathing problems) in the past, then you may need to fly with oxygen. When I fly, I immediately feel crisis pain after landing and I need a couple of days to feel better and get my pain under control before I can do anything. So, plan some rest days after landing at your destination to just relax.

I’m the parent of a son with sickle cell trait and wondered if he is subject to the episodes you referred to this morning.

A very small percentage of people with sickle cell trait have some mild pain episodes. However, these pain episodes are not as severe as someone with full-blown sickle cell disease. At the most, the pain feels more like the body aches – the kind of body aches that you feel when you have the flu. Make sure that your son rests, drinks water, and take an over the counter pain medicine, such as ibuprofen.

When a sickle cell crisis occurs and you go to the ER, how should you help or advise them on how to treat you? I’ve seen sickle cell patients wait 6 to 10 hours in the ER before obtaining a room for treatment.

Unfortunately, some emergency rooms don’t recognize a sickle cell crisis as a true emergency. As the painful crisis is happening, the cells and tissues in the body aren’t receiving oxygen. This causes tissue damage and over time, this can lead to organ failure and early death. So, sickle cell crisis is a true emergency and we need an elevated awareness and education among medical professionals.

Please express urgency as soon as you walk through the ER doors, especially if you have pain in the head or chest. Take water and food with you in case the ER wait is long. Try to go to the same ER every time, because they have your medical records. When possible, call your doctor’s office if you decide to go to the ER, since they may be able to facilitate your care a little bit better. If your doctor would like to do a direct admit, you might be able to skip the ER altogether.

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