Caring for a loved one with sickle cell disease can be challenging, but with the right knowledge and approach, it will be rewarding to see your loved one live a fulfilling life despite their illness. Here is some useful information and tips to help you provide the best support possible.
What is Sickle Cell Disease?
Sickle cell disease is a group of inherited red blood cell disorders that affect hemoglobin which is the protein that carries oxygen through the body. Typically, red blood cells are round, and they move through blood vessels to carry oxygen to all parts of the body. In someone who has SCD, the red blood cells become hard and sticky and look like a C-shaped farm tool called a “sickle”. The sickle cells cause a constant shortage of red blood cells and can get stuck and clog the blood flow when traveling through blood vessels which ultimately causes extreme pain in the area that leads the body into "crisis".
What Triggers a Sickle Cell Crisis?
Anything that causes your blood vessels to constrict can bring on a crisis.
These triggers include:
- Low blood oxygen
- Dehydration
- Physical or psychological stress
- Exhaustion
- Infection
- Extreme weather conditions
- Pain to the body
- Excessive use of alcohol or tobacco products
How Does It Affect The Body?
The most common symptoms of sickle cell crises are:
- Excruciating pain
- Low blood pressure
- Lost of consciousness
- Shortness of breath
- Serve infections ( usuaully in children)
- Servere anemia
- Yellowing of the skin, eyes, or inside of mouth which is also known as jaundice.
- Severe organ damage
- Acute chest syndrome
Remember that these triggers/symptoms look different for each person so it is important to avoid making assumptions or offering unsolicited advice. Instead, try to be a safe space for your loved to comfortably communicate their feelings, needs and wants. You have taking the first step in showing your support by educating yourself to better understand what your loved one is going through and how to best support them.
How Can I Support My Loved One?
Here are some tips to you can start implementing today:
- Act normally! This is one of the healthiest ways to offer your support. All too often, people disclose their medial history and it causes everything to change amongst their friends/family. Treat your loved one with the same level of love, respect and kindness as you would any other person.
- Offer emotional support by being present. Listen to understand, offer words of encouragement, leave your judgement at home and help your loved one stay positive.
- Encourage your loved one to lead a healthy lifestyle by getting regular check-ups, maintaining a balanced diet, staying hydrated, and keeping active.
- With crises being the most common symptom, it can be helpful to pay attention to your loved one's triggers and provide support through managing their pain.
- Offer support where needed without reminding your loved one of any limitations they may have.
- Help them find a support group to find resources and connect with others. It can be very refreshing to connect with a group of people who can fully understand your battle through first-hand experience.
- Enjoy life with your loved one! It is important to prioritize quality time, cherish the moments spent together and create meaningful memories that will last a life time.