On Apheresis Awareness Day, we shine a light on a treatment that has been part of lipid care for decades–but also on the people whose lives depend on it.
Apheresis is a procedure in which blood is passed through a machine to remove specific components before being returned to the body. In lipid disorders, different forms of apheresis can be used to remove substances such as LDL cholesterol, lipoprotein(a) [Lp(a)] or triglyceride-rich plasma. For some people living with severe inherited lipid conditions, including homozygous familial hypercholesterolaemia (HoFH), very high Lp(a), or familial chylomicronaemia syndrome (FCS), it can play a crucial or even life-saving role.
For the people receiving it, apheresis can mean hours of treatment, week after week or even several times a week. It can mean needles, pain and exhaustion. It can affect work, school, travel and decisions about where to live. Access to an appropriate treatment centre–and whether treatment and travel are funded–can add another layer of uncertainty and burden. For some, apheresis begins in childhood and remains part of life for decades. For others, it becomes necessary at a particular moment, such as during pregnancy. These very different realities are reflected in the experiences shared by our community.
The stories also show why access matters. One member of our community describes having to navigate solidarity funding because her treatment is not reimbursed, alongside the cost and practical burden of travelling regularly to receive care. Another describes having to consider the availability and funding of apheresis when travelling or even thinking about moving country.
And yet, alongside these challenges, the words used to describe apheresis are powerful: a lifeline, relief, a treatment that slows disease progression, and a treatment that can make it possible to reach major milestones in life. During pregnancy, for example, two of the experiences shared below illustrate how apheresis became an intensive but essential part of protecting maternal health and supporting a safe pregnancy.
This Apheresis Awareness Day, we want to go beyond explaining the procedure. We want to listen to the people who experience it.
Below, members of our community share what apheresis means in their lives – why they need it, what it gives them, and the physical, practical and emotional challenges that can come with it.
"I started apheresis at just nine years old, and now, at 41, it has been part of my life for more than 30 years. I never imagined that a treatment I once knew nothing about would become such an important part of keeping me alive. Alongside my medication, apheresis has given me a lifeline through some of the biggest moments of my life, including pregnancy, when I needed treatment twice a week until 36 weeks.
Living with apheresis also means living with limitations that people don’t always see. I have experienced pain, difficult access, needles and vasovagal episodes, and it can be challenging explaining to employers why regular treatment is so important. Even travelling or considering relocating to another country means asking: Is there a treatment center nearby? Can they treat me? Will it be funded? My treatment has to be considered in almost every major life decision.
But despite the challenges, I am incredibly grateful for apheresis. After each treatment, I feel a sense of relief knowing that excess cholesterol has been removed and that, for a little while, my body has had a chance to reset. It is a love-hate relationship, but after 30 years, apheresis is part of who I am. It has given me more than treatment; it has given me the chance to live my life."
"At just 4 weeks old, I was diagnosed with FCS. I have been on an FCS diet my entire life.
I managed to lower my triglycerides through dieting with some success. However, during pregnancy, this was unfortunately no longer possible. In my second trimester, my triglycerides began to rise uncontrollably. I had to stay in the hospital. I started going for plasma apheresis once a week, but in the 27th week, I had to start going twice a week right up until the birth of my son in the 41st week of pregnancy. My triglycerides would sometimes spike above 20 mmol/L, but plasma apheresis lowered them to a level that was not dangerous for me and my baby. After giving birth, I had to undergo plasma apheresis one or two more times.
Plasma apheresis was a completely new experience for me. In the beginning, I was a bit scared of plasma apheresis and it was a bit painful. I had a wonderful family, doctors, and medical staff who supported me at that moment. I was aware that, at that time, it was the only thing saving our lives (mine and my baby's). I had to stay in the hospital the entire time until my son was born. It was not even that hard for me to go for plasma apheresis; somehow, I handled it all with ease. I knew the reason why I was doing it. And in the end, my effort paid off. I gave birth to a healthy son."
"I undergo LDL apheresis because I live with homozygous familial hypercholesterolaemia (HoFH). For me, LDL apheresis is a miracle treatment. It helps slow the progression of my heart disease, even though the treatment itself is physically exhausting and can cause pain, fatigue and muscle aches.
Unfortunately, in Belgium, the treatment is neither officially recognised nor reimbursed by INAMI [the Belgian National Institute for Health and Disability Insurance]. Accessing it is an uphill battle and requires support through solidarity funds. I also receive no support for transportation, even though each journey to the treatment centre takes between 45 minutes and an hour, with the additional cost of fuel.
People undergoing dialysis have access to certain forms of support that I do not receive, even though I experience similar symptoms, including fatigue, muscle aches and dry skin. There is also no one to help with the administrative procedures–my professor and the nursing team are the ones who manage them."
"My relationship with apheresis came with a very rocky start, memories over the years has faded but the chill lives on. Waking up after surgery I can still remember hearing this blood rush sound coming from my left arm heavily bandaged after the shunt was put in.
In 1987 in Johannesburg, South Africa I came face to face for the first time with this machine, scared senseless by all the pipes and filtration equipment and a lonely metal bucket the type my mother used to mop the floors and so started a love-hate relationship for approx. 3 years when it was discontinued due to the high costs involved.
So, you might wonder about the love-hate relationship, what did I love? As a 15 year old every two weeks I would miss out on a day at school, the attention from the nurses, the hospital food (it was pretty good), yet the best part was to see that very faint oily looking liquid that skimming the top in the that metal bucket, I was told that was the cholesterol, getting extracted from my blood. The hate, I am very easy when it comes to needles, they don’t bother me, having two needles shoved up your arm isn’t what I would call fun, not being able to do contact sport like rugby because I could damage my shunt, I wasn’t allowed to do wheelies with my bike, and waking up to this whooshing sound of the blood rushing through my arm. However, my total cholesterol would be closed to perfect (or whatever that meant) after each treatment, but it didn’t last long and would be at normal levels (high) in less than 14 days.
That was my relatively short experience with apheresis lasting less than 3 years before it was stopped for reasons outside our control. I would like to think that I had outlasted that green machine now languishing dust covered in some long forgotten storeroom at Charlotte Maxeke Hospital."