Day 1: Just Been Diagnosed with Sickle Cell Disease

Getting diagnosed with sickle cell disease is only the beginning of your journey with this lifelong illness. Sickle cell disease gets its name from the abnormal sickle-like shape of the red blood cells in people who live with it. These blood cells can clump together to block blood flow throughout the body. It’s these cells that can cause the usual symptoms that are associated with the disease. These symptoms include anemia, nerve pain, joint pain, and swelling in the joints. The good news is that sickle cell disease can be effectively managed if you work with your doctor. As you’re living with the illness, there are a few things you need to know.

1. You’ll Need A More Definitive Diagnosis

A diagnosis of sickle cell disease is not enough. Your doctor will need to do further tests to determine the type of sickle cell that you have. This information will help to pinpoint the severity of your symptoms as well as how you should be treated.

Currently, there are six possible types of the disease. The common ones are HbSS, which is a severe form of the disease, HbSc, which is milder, and HbS beta-thalassemia, which can be either. The rarer forms are HbSD, HbSE, and HbSO.

2. You’ll Need A Pain Management Plan

Pain is one of the characteristic symptoms of sickle cell disease. While the severity may vary, you’ll need to work with your doctor to develop a pain management plan. You may only need over-the-counter painkillers or prescribed drugs. During a crisis, it’s possible that you’ll need stronger medication.

3. You Should Know The Signs Of A Crisis

A sickle cell crisis occurs when blood cells clump together and cause a blockage. A few of the symptoms you can experience are pain, fatigue, headache, dizziness, and trouble breathing. While there are times when you can handle it at home, a severe crisis will need your doctor’s help.

4. You’ll Have Regular Doctor Visits

After your diagnosis, it’s likely that your doctor will set up a schedule for you to see them. The frequency will vary depending on your age and the type of sickle cell disease you have. Of course, you may have unscheduled visits if you’re having a crisis or there are complications.

5. There Can Be Complications

Given the nature of the disease, it shouldn’t be surprising that there can be complications from living with it. A few well-known ones include anemia, acute chest syndrome, leg ulcers, and an increased risk of having a stroke.