Living With Sickle Cell Hormones & Cold

Are you living with Sickle Cell Disease and actually investing in learning about it? Or are you doing what I did for years, surviving it while convincing yourself it wasn’t that serious?

Let me tell you my story.

For as long as I can remember I dealt with severe chest pain, swollen hands and feet, even before I knew I had a disease. I just thought that was life.

In boarding school I would willingly volunteer to clean the toilets. Nobody wanted that job. I took it every time. Not because I was noble but because the pain that came after cutting grass or sweeping a large area was unbearable. I chose the worst option to protect myself from something I couldn’t name yet.

I carried two buckets of water at once and endured the pain after. I thought I was just pushing through.

Then I went for a routine medical screening before university admission and a nurse looked at me and said, “Do you know you have SS disease?”

I stared at her. I said no.

She said, “Now you know.”

I walked out of that hospital and told myself it was not my result. I continued living my life as normal. Somewhere in my mind I would research a little about the condition but I was not ready to accept it.

Seven years passed.

After I finished my university program I finally went to verify. Different labs, different cities, different states across Nigeria, all within a few months because they were not in the same location. Every single result came back the same.

I accepted it. But I was also religious and I was still rebuking it.

I did not see a doctor after that. No one sat me down and gave me a treatment plan. I researched on my own and put myself on folic acid because I knew at minimum that was necessary. That was the extent of my medical care at the time.

I knew two people living with the condition. All I could do was empathize with them because I thought I had it better. What I did not know was that I was having crises. I just did not know at the time that is what SCD crises were.

Then I relocated. I left Nigeria, over thirty years of living in that climate, and moved to a country with a completely different temperature. Cold in a way my body had never experienced. Everything I thought I knew about managing my health changed the moment I landed.

I walked into clinics that had never heard of Sickle Cell Disease. For three years I was enduring crises, cycling through different pain medications, trying to figure it out and stay afloat. I had no idea how to navigate the health system. I was just surviving.

What I did not know was that the whole time, my cells and organs were silently getting damaged.

I finally found a group of hematologists. Sigh of relief, right? I thought so too.

But I was not paying proper attention to my treatment. I did not know what to expect so I gave myself that excuse. Then I fell critically ill and this time it did not feel like my usual crisis. I kept saying that. It did not feel like my crisis. But it fell on deaf ears.

Until one of my hematologists called me randomly. She asked about my symptoms. I repeated myself. She asked further questions and told me one of my anti-inflammatory medications might have caused an ulcer. She contacted Gastroenterology. They called me and said they had no available slot but if I came in and waited, they would take me if there was a no-show or cancellation. I went. The wait was long. But the endoscopy was done.

As that was going on, all the chest and back pain from my crisis caught up with me and I was admitted again. That is the cycle. Every three to four months, back in hospital. It has not stopped.

Around April 2025 I noticed I could not see properly. I did not think much of it. After a week I took an allergy medication. After a month I called my family doctor and she prescribed allergy eye drops and told me to give it time, not to call after one week if it was not working. So I kept using them.

One Saturday evening I was driving home from work and I almost hit someone. That night I searched for an eye clinic I could walk into the next morning.

I found one. After all the checks I was referred to an ophthalmologist. After all the tests the diagnosis came back as Sickle Cell Retinopathy, damage to the blood vessels in the retina caused by SCD. I had never even heard of it. I was booked for surgery and laser treatment. It resolved. But I want you to sit with that. I almost lost my sight and it started as something I dismissed as seasonal allergies.

Since then I have not been the same. The hospitalisations have continued. The most recent update is that my left atrium is enlarged as a result of hemolytic anaemia. I am now on multiple blood pressure medications and antidepressants.

If you think the depression is dramatic, I want you to really think about what it feels like to have your body quietly falling apart for years while you kept showing up to work, to life, to everything, and nobody around you could see it. It is not dramatic. It is the only rational response to an irrational situation.

I am sharing this because someone reading this right now might be where I was ten or twenty years ago.

Maybe you got your diagnosis and walked out of that clinic telling yourself it was not your result. Maybe you are managing but not really paying attention. Maybe you do not understand your medical records or what your care team is telling you and you have not asked because you do not want to know.

I understand that. I lived there for a long time.

But the version of me that paid attention too late is the one writing this post right now, with an enlarged heart, on blood pressure medication, wishing someone had told her sooner that understanding your own condition is not optional. It is the work.

So here is where you start.

At your next appointment, ask your hematologist these questions and write the answers down:

What is my current HbS percentage and what does that mean for me specifically?

What organs are you monitoring and why?

What symptoms should I never dismiss or wait on?

What does my latest blood count tell you about how my body is doing right now?

Am I on the right treatment plan for where my disease is today, not where it was five years ago?

You are allowed to ask these questions. You are allowed to take up space in that room. Your care team works for you and the more you understand, the better you can advocate for yourself.

No one is coming to pay attention on your behalf. That part is yours.

Learn about your disease. Understand your medical records. Research what your diagnosis means for your body long term. Pay attention before your body forces you to.

My route was not smooth. Maybe yours does not have to be as hard.

Save this. Share it. Tag someone who needs to read it.

Living With Sickle Cell, Hormones & Cold is a community for people navigating chronic illness where we talk about this honestly. Follow along. Follow along.

They always ask the same questions.

What is your pain level? Where does it hurt the most?
You answer honestly. You always do. And then, almost before you finish speaking, the opioid is already being ordered.
Not because they don’t care. I think most of them do. But somewhere between the question and the prescription, the actual conversation gets skipped.

The one where someone asks how long this has been building. Whether this feels different from last time. What you’ve already tried. What your body is actually telling you.
Instead you become a protocol. A set of symptoms to manage and discharge.
I have sat in more hospital rooms than I can count and answered those same questions. And I have left most of them feeling like the crisis was treated but I wasn’t.

There is a difference between managing someone’s pain and actually seeing them.
If you have ever left a hospital feeling like a checkbox, this page is for you. You deserved more than that. So did I.

Have you ever left a hospital feeling like a number?

Living in Vancouver with Sickle Cell Disease and struggling to access care?

If you are living in Vancouver or anywhere in British Columbia and have Sickle Cell Disease, navigating the healthcare system can feel confusing, especially if you are new to Canada.

Many people in BC do not have a family doctor, and that can make managing a chronic condition like sickle cell even more difficult.

If you are trying to access care, here are some options that people in BC often use:

1. Walk-in clinics or urgent primary care centres

Even without a family doctor, walk-in clinics and Urgent and Primary Care Centres (UPCCs) can assess symptoms, prescribe medications, and make specialist referrals if needed.

2. Emergency departments during a pain crisis

A vaso-occlusive crisis is a medical emergency. Emergency departments should treat severe sickle cell pain as urgent.

If you go to the ER, it can help to bring a brief medical summary, including:

• your sickle cell genotype (HbSS, HbSC, etc.)
• medications you take
• previous complications
• your usual pain management plan

3. HealthLink BC

You can call 811 in British Columbia to speak with a nurse who can guide you to available services.

4. Specialist referral

In BC, a referral to a hematologist is usually needed to receive ongoing sickle cell care.

Walk-in doctors and urgent care centres can sometimes provide these referrals.

Living with sickle cell disease is already challenging. Accessing care should not make it harder.

If you live in Vancouver or elsewhere in BC and have sickle cell disease, what has your experience been like navigating the healthcare system?

Sharing experiences can help improve awareness and support others who may be facing the same challenge

Myth: Sickle Cell Disease and Sickle Cell Anemia are the same thing.
Fact: They are related, but they are not the same.

Many people use the terms Sickle Cell Disease and Sickle Cell Anemia as if they mean the same thing. They do not.

Sickle Cell Disease (SCD) is the umbrella term for a group of inherited blood disorders caused by the hemoglobin S gene.

Examples include:
• HbSS
• HbSC
• HbS-beta thalassemia

Sickle Cell Anemia (SCA) is one specific type of Sickle Cell Disease.

It occurs when a person has the HbSS genotype, meaning they inherited the sickle gene from both parents.

A simple way to understand it:

Sickle Cell Disease = the whole family
Sickle Cell Anemia = one member of that family

So:

• All people with Sickle Cell Anemia have Sickle Cell Disease
• But not everyone with Sickle Cell Disease has Sickle Cell Anemia

Another important point:

Other forms such as HbSC are still real forms of Sickle Cell Disease and can still cause anemia, pain crises, and serious complications.

Understanding these differences helps reduce misinformation and improve awareness.

Before today, did you think Sickle Cell Disease and Sickle Cell Anemia were the same thing?

Sources
Centers for Disease Control and Prevention (CDC)
National Heart, Lung, and Blood Institute (NHLBI)
American Society of Hematology (ASH)

What Hormonal Changes Feel Like in My Body During Cold Weather

Hormonal changes in a cold climate don’t announce themselves politely.

For me, it can feel like my body can’t agree on a temperature. I can be sweating and cold at the same time. Heat rising suddenly, then chills settling deep into my bones. My clothes feel wrong no matter what I wear.

Cold already affects my circulation and pain because of sickle cell. When hormones shift, everything feels amplified. My energy drops faster. Pain comes on more easily. What used to be manageable cold becomes something my body reacts to sharply.

The hardest part is that this doesn’t look dramatic from the outside. It looks like discomfort. Inside, it feels like my system is overstimulated and under-supported at the same time.

I’ve had to learn small adjustments:
• layering so I can respond quickly without shocking my body
• changing damp clothes immediately
• resting earlier instead of pushing through
• paying attention to patterns instead of blaming myself

I don’t see many conversations about how hormones and cold interact with sickle cell. Especially from people living it. So I’m writing it down.

If this sounds familiar, you’re not imagining it. Bodies managing sickle cell, hormonal shifts, and cold climates are doing a lot at once.

This is lived experience, not medical advice. Just naming what often goes unnamed.