# How I Start Conversations About Sickle Cell

By

Elle Cole, José Vadi

Feb 15, 2022 • 5 min read

_Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023._

Nearly three months pregnant with twins, Elle Cole and her husband visited her OBGYN and both took routine blood tests. The results were a surprise: both parents tested positive for sickle cell traits.

Sickle cell disease is a group of blood disorders that affects the red blood cells, which are important for moving oxygen throughout the body. People with sickle cell disease have abnormal hemoglobin, which is the protein in red blood cells that carries oxygen.

We spoke with Elle about [her career as a children’s book author](https://sicklecellbooks.com/), and how online blogging allowed her and others to find and build community around one of the most far-reaching rare diseases worldwide.

Whenever I travel, people ask me what I do and I say, “I write [children’s books for kids with sickle cell disease](https://www.amazon.com/ABCs-Sickle-Cell-Disease-Elle/dp/1735049840).” I often start by just asking, “Have you ever heard of sickle cell disease?” Sometimes they’ll say they have.

One trip, I was telling someone about what I do and the person said, “I thought that had been eradicated? I thought no one else had that disorder.” And I told them I wish it had been eradicated, but that it’s actually quite prevalent. Today, it is one of the most common inherited disorders in the world.

I tell them that information, and then I tell them about our blood cells. We have three different types of blood cells in our body – white, red and platelets. In sickle cell disease, there is a problem with the hemoglobin, and this changes the shape of the red blood cell. It’s not a round healthy blood cell. With sickle cell patients, their red blood cells are C-shaped, like a crescent moon or the tool a sickle, which is how it gets its name.

It takes conversations like this to really educate people about how disruptive this disease is not just for the patient but for their family — because it’s so unpredictable and different for every patient. Some have hip replacements, or have a pain management doctor or neurologist, and many deal with chronic pain.

My family and I live in Maryland. My husband and I have twin daughters currently approaching teenage years — Leila and Maya — fraternal twins born nine minutes apart. Only one child has health challenges. When I was 20 weeks pregnant, my husband and I were going to our doctor's appointments. The ob-gyn asked us both to take a blood test. We found out that we’re both carriers of the sickle cell trait, which meant that our offspring would have 1 in 4 chance of having sickle cell disease.

Prior to that appointment I didn't know I had the trait, and my husband didn’t either. I have four older siblings and my husband’s one of three. It turns out that neither of our siblings have the sickle cell trait; we are the only offspring in our family to have it. We have a parent that has it.

When our daughter was diagnosed, it really meant that we had to learn everything we could. We couldn’t rely on information from a parent and their experience to really help us cope with the health challenges that our daughter would have. There should be a line of protocol that presents what this disease is, how it works, what steps you have to take to combat it.

People often hear about a “pain crisis” that sickle cell patients suffer from, but what’s important to keep in mind are the symptoms of a crisis mean that something else is going wrong in the body. Your red blood cells carry oxygen throughout your body, and we know all of our body needs oxygen. When sickle cell patients have a pain crisis, it’s not just affecting those sticky cells that clump together and aren’t able to pass through the blood vessels. A crisis can truly occur anywhere — someone’s toe, arm, head.

My daughter's first pain crisis was at five years old. She was crying nonstop for hours, and the pain lasted for days. Her little body was pulsating. Pain medication isn't anything a parent wants to give their child, but you have to.

As a parent, you want to know how to soothe your child. When you can’t, you feel like everything is out of your hands, like you have no control over the situation, helpless.

I’ve tried to educate my child on understanding her body cues. I kept her homeschooled to minimize the amount of germs she could be affected by. She also has type 1 diabetes, so we have to be extra careful. In teaching her to listen to her body, I let her know, If you are tired, you can rest. Which is different than in a school setting where meeting benchmarks on time may not be possible. I've had to say, What’s best for her and her health right now and what can we do later? How do we work efficiently and flexibly?

In the pandemic, we’ve relied on technology to communicate with loved ones and friends. We haven’t mixed with a lot of people because of safety concerns. Thankfully, we’ve benefited from some telehealth appointments but with sickle cell, they frequently need to draw blood so we often have to go into the hospital. During the pandemic my husband had to watch our other child while I took my daughter in for appointments. My sister — a licensed clinical therapist — moved closer to me when my daughter turned 6. She’s an hour’s drive away and has been truly helpful and encouraging.

I started [my blog](https://cleverlychanging.com/) in 2010 to document our experiences because I didn't have any friends who had sickle cell or kids with it. I was just thinking, This is scary and this is new; I need to find people that can relate to what I am learning, and what my daughter’s future may be like. Social media really came into play in 2010. I joined Facebook groups with sickle cell communities with other parents and patients. It was my gateway into the reality of sickle cell. I didn’t start meeting people in person, though, until 2019 when I started traveling and sharing my story in person. Despite the pandemic, I built on those connections through technology, hosting seminars with [Sickle Cell Community Consortium](https://sicklecellconsortium.org/). In 2021, I co-hosted an [international caregiver summit](https://www.scdcaregivers.org/summit) online with people from Ghana, Trinidad and Tobagao, the U.K., Canada and beyond sharing their experiences.

I learned that you have to connect with other people because what you’re facing is not unique to you. The more I shared my experiences and just was willing to listen to people, I realized my community grew.

AllStripes approached me, and I saw I knew others who were aware of the program. When you have a rare disease, we have to stick together. During this time there are so many caregivers and patients that are struggling. When we share information and camaraderie and a level of understanding, we feel like everything is going to be okay. That’s where AllStripes and similar communities come into play. They let the rare disease community know I have your back, I’m right beside you, we’re in this together.

## We know that every person's story is unique and deserves to be heard.

### Create a List

List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.

### Ensure You Have the Appropriate Legal Status

It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.

### Gather and Organize the Medical Records in One Place

It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.

### Review the Medical Records to be an Informed Advocate

The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.

### Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association

## Together, we can make a difference.

### 1. Build a support network.

When you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.

There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.

### 2. Stay organized.

The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.

### 3. Explore treatments and clinical trials.

We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.

### 4. Make time for self-care.

It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one.