Mary is a 30-year-old London-based sickle cell patient using her experiences to build up others and raise awareness of what it’s like to live with a rare disease.Living with sickle cell disease is no small feat. It’s a condition that comes with a host of symptoms, complications, and issues that are unpredictable and span a lifetime. When people think about sickle cell disease, the most commonly known symptom is the vaso-occlusive crisis, also…
First things first: Take a deep breath. Finding out your child has sickle cell disease can be overwhelming. It’s not what you planned or hoped for, and while it changes things, it doesn’t end anything. This diagnosis may bring a wave of guilt, fear, and grief. That’s completely…
Two of the most commonly known symptoms of sickle cell disease are a vaso-occlusive crisis (perhaps the best-known symptom) and fatigue. But others aren’t so well-known; in fact, I’d say most people aren’t aware of them. Here are a few of those lesser-known symptoms. Stunted growth. If you know…
Traveling to cold climates with sickle cell disease can be daunting. Low temperatures can trigger a crisis, causing intense pain and discomfort. None of us want that. I recently returned from a trip to chilly Switzerland, and preparing for the cold was crucial to ensuring my health stayed…
Sometimes it’s important to dive right in and conquer your fears. In 2018 and 2019, I suffered two major health events: a pulmonary embolism and a severe sickle cell crisis, which happened while I was on a flight. As a result, air travel has become extremely cumbersome…
In the wake of the British government announcing recently that it plans to cut its welfare budget by more than £5 billion ($6.5 billion), I’ve noticed a shocking number of comments in mainstream and social media that seek to shame the disabled population with harmful rhetoric and negative stereotypes. To…
The date was Friday, Jan. 31, 2025. It started like any other day. As I settled down to start working, I noticed I had a lot of messages, and more came in as the day went on. Message after message, phone call after phone call alerted me about a supposed…
In a society that’s seemingly obsessed with sex and physical intimacy, you may be surprised to hear that there aren’t many resources available for those with chronic illness and physical limitations. So let’s talk about it. Sickle cell disease is one of many conditions that can affect physical intimacy.
Keeping with the theme of February, the month of love, I wanted to offer some practical tips for how to support a partner with sickle cell disease. The reality of living with a chronic illness is that things may not always go well, as the condition can be unpredictable.
Because today is recognized as Valentine’s Day or “love day” across much of the globe, I want to explore the difficulties that can arise within romantic relationships when one partner has sickle cell disease. (Fun fact: Many parts of the Eastern Orthodox Church celebrate Saint Valentine on…
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