10 Tips I Wish I Knew When I Was Diagnosed With Sickle Cell Disease

While it’s rare, Sickle Cell Disease can also affect people of any age, race, or gender, and it’s usually not diagnosed until you’re an adult. If you find out that you have Sickle Cell Disease, there are some things you should know as soon as possible so that you can get started on the treatment plan that will help keep your symptoms at bay and manage your disease better than I could when I was first diagnosed. Here are ten things I wish I knew when I was diagnosed with Sickle Cell Disease.

Sickle Cell Disease
Sickle Cell Disease

List Included

  • Don’t Feel Guilty
  • Be Careful With Exercise
  • Try Not To Spend Too Much Time Inside
  • Routine Is Your Friend
  • Get A Good Night’s Sleep
  • Limit Stress and Negative Emotions
  • Learn About Pain Management Options
  • Stay Positive – Pain Doesn’t Define You!
  • Set Measurable Goals To Keep Yourself On Track And Motivated
  • Remember That You Are Not Alone. There Are People Who Understand And Who Will Help

Step 1: Don’t Feel Guilty

More importantly, you shouldn’t feel guilty about your diagnosis. You didn’t choose to have sickle cell disease. And there are many people who would much rather have it than cancer, multiple sclerosis, or rheumatoid arthritis. It’s all relative and no matter what is wrong with you, you should never feel like your sickness is a burden on others.

We need more acceptance of people with chronic illnesses and a realization that we are capable of doing anything we set our minds to; as long as we take care of ourselves and manage our illness well, that is! My name is Angela M. Young and I was diagnosed with sickle cell disease at age 15. This post is my attempt to compile some advice for other young adults newly diagnosed with SCD (or any other chronic illness).

Step 2: Be Careful With Exercise

If you’re someone with sickle cell disease, exercise is important but it needs to be done with care. There are ways that exercise can make your symptoms worse so as soon as you start exercising, try to find a doctor who can help you understand how your body responds to certain types of exercises.

And if you already have sickle cell disease, it’s important to get regular checkups—some people need additional treatments if they do certain types of activities too often or too intensely. (Or might develop other complications.)

For example, some doctors may recommend taking blood transfusions after doing intense sports like running or boxing. Or maybe using an inhaler before and during an intense workout session might help mitigate symptoms that flare up due to working out.

Step 3: Try Not To Spend Too Much Time Inside

Studies have found that spending too much time inside can raise your risk of chronic diseases, such as asthma and diabetes. If you’re diagnosed with sickle cell disease (SCD), it’s especially important to stay active, even if you need to alter some activities for safety reasons.

For example, if you can walk but not run, plan a walking date with friends instead of a running date. You can still get together and socialize while keeping within your limitations. Remember: You can lead an active life without breaking down barriers just because you have SCD. Sickle cell disease is a genetic disorder in which red blood cells change shape, becoming rigid like a sickle or crescent moon rather than flexible like a disc.

The defect causes blood cells to clump together and block small blood vessels, depriving tissues of oxygen-rich blood. A person who has two genes for SCD will likely develop symptoms sometime during childhood or adolescence; those who have only one gene may never experience any symptoms at all. There are four types of SCD—two types are caused by having two genes for SCD and two by having one gene for SCD—and each type has its own set of symptoms.

Step 4: Routine Is Your Friend

As a person with sickle cell disease, you need to be able to predict how your body will react under different conditions. However, what’s right for one individual with SCD might not work for another. What works for me may not work for you, and vice versa. The important thing is that we keep ourselves educated so we can make better decisions in our daily lives.

So here are some of my routines that have helped me stay healthy Eat protein at every meal. This helps maintain my red blood cells and keeps them from becoming crescent-shaped (sickle-shaped). Hydrate before exercise. For most people, hydrating before exercise is crucial to prevent dehydration during physical activity.

Since dehydration makes symptoms worse for those with SCD, staying hydrated helps alleviate many symptoms during exercise even if it means using intravenous fluids if you’re particularly active or working out at high altitudes. Workout on an empty stomach: Exercising when your stomach is empty gives you more energy than exercising after eating breakfast or lunch because there’s less waste in your bloodstream when you’re hungry! Exercise increases the oxygenation of blood cells and pushes waste out through sweat glands both processes increase after-meal fatigue.

Step 5: Get A Good Night’s Sleep

Rest is key to managing sickle cell disease. Sleeping regularly will help you manage pain and prevent complications, like organ damage and infections. Also, if you’re experiencing extreme fatigue, talk to your doctor about getting tested for anaemia.

Anaemia makes it more difficult for red blood cells to carry oxygen throughout your body—which can lead to problems when your body is under stress. Sickle cell disease is a disorder that affects red blood cells, which are responsible for carrying oxygen throughout your body.

Red blood cells normally take on a doughnut-like shape; however, in people with sickle cell disease (SCD), these cells take on a crescent or sickle shape instead. This abnormal shape causes them to become rigid and sticky and they have difficulty moving through small blood vessels.

Sickle Cell Disease
Sickle Cell Disease

Step 6: Limit Stress and Negative Emotions

Stress and negative emotions can make sickle cell symptoms worse, which can be frustrating because they’re hard to avoid. If you’re not able to limit them, there are a few things you can do that may help with symptoms. Take measures to manage your stress levels: Exercise more, meditate more and sleep more to ensure you have time each day when nothing stresses you out.

Practice gratitude: No matter how bad your day gets, always remember to be grateful for what you have even if it seems small. Self-care is an important way of dealing with stress; try yoga or listen to relaxing music if you’re feeling overwhelmed by your condition or life in general. Sickle cell disease is an inherited blood disorder where red blood cells become crescent-shaped instead of round.

This means they don’t flow through blood vessels as easily as normal red blood cells do, causing pain, swelling and fatigue. The disease occurs most often among people whose ancestors come from areas where malaria was common, such as Africa, India and parts of Central America and South America. It’s also more common among people who have parents who are from these regions.

Step 7: Learn About Pain Management Options

There are many options for pain management, whether it’s medication to keep your pain in check or psychological approaches to dealing with a chronic condition. What works for one person might not work for another, so it’s important to look into your options and figure out what will work best for you.

Keep in mind that as you grow and get older, your body changes and you might need different treatments than when you were younger. No matter what course of treatment you choose, it’s vital that you speak with your doctor regularly about your progress and how they can help make things easier on you. Don’t be afraid to ask questions! That applies both to sickle cell disease itself as well as how best to deal with its symptoms.

Step 8: Stay Positive – Pain Doesn’t Define You!

It’s tough to stay positive when you have sickle cell disease. It is, after all, a potentially life-threatening condition. But you don’t have to be a prisoner of your disease. You don’t even have to let it define you, as it doesn’t define me (at least not anymore).

Sure, there are days when pain keeps me in bed and I’m forced to see my friends and family from behind my laptop screen but those days are rarer now than they were three years ago because I’ve learned how to cope with sickle cell symptoms and find new ways to get through them. Yes, even if we deal with pain daily and sometimes in severe amounts we still live happy lives!

Step 9: Set Measurable Goals To Keep Yourself On Track And Motivated

One of your first goals should be getting out of bed and eating something. Eat small meals throughout the day, and stop yourself from skipping breakfast that will help keep you fueled for longer. If you can, exercise every day to boost your energy and get a little bit stronger. Exercise may not always feel easy or fun, but it’s still important! It will help you to move around more easily and take some weight off your joints.

So even if going to spin class feels like a challenge, remember that daily activity is what will keep you feeling healthy in long term. Sickle cell disease (SCD) is an inherited blood disorder that causes red blood cells to change into a sickle shape, which makes them hard and sticky. These sickle cells cannot travel through tiny blood vessels as they normally would because they are blocked by narrow passages called capillaries.

Step 10: Remember That You Are Not Alone. There Are People Who Understand And Who Will Help.

If you or someone you know has been diagnosed with sickle cell disease, here are some things to remember. You may feel alone and scared, but you aren’t. There are people who understand and who will help—you just have to reach out to them. It is difficult for many people with SCD to share their experiences with others because they fear being misunderstood, not knowing what they don’t know (and still learning), or making their loved ones uncomfortable by bringing up topics that can be upsetting.

If you need advice on how to tell someone about your condition, start with a friend or family member whom you trust, or seek guidance from a trusted counsellor/doctor/mental health professional in your area.

Conclusion

People with sickle cell disease deserve to live a life without pain and without limits. Unfortunately, many still do. Increased awareness can help patients manage their symptoms, doctors communicate more effectively and researchers look for cures. It’s a lengthy process that requires input from all parts of society, but there is hope and some answers are already available if you know where to look.

If you have SCD or any other chronic illness, please contact your primary care physician if you have questions about treatment options or any other issues related to your illness. You deserve relief and comfort; don’t let your condition stop you from living a full life. Read More…

Sickle Cell Disease
Sickle Cell Disease

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