Noshina Kiani is the workstream lead for cardiovascular disease prevention at Health Innovation Yorkshire & Humber. In this blog, she discusses her own journey with Familial Hypercholesterolaemia and how she feels empowered to manage her condition and educate others to do the same.
Familial Hypercholesterolaemia (FH) is an inherited condition passed down through families, which can lead to extremely high cholesterol levels. It affects 1 in 250 people in the UK, yet over 90 per cent of cases are still undiagnosed.
Throughout our work we are dedicated to enhancing the understanding of cardiovascular diseases (CVD) and its associated risks, with a current emphasis on FH. Our efforts include collaboration with our Integrated Care Boards (ICBs) to support the region in addressing these health concerns and helping them identify areas which need more support in treating and managing patients.
On a personal level, I am the perfect example of how people can have no underlying health conditions, therefore remain undiagnosed and untreated for a large part of their lives. My journey began when I was in my late thirties where a random health check at work revealed elevated cholesterol levels. It wasn’t until a GP follow up blood test that I learned I had FH, a genetic condition that had unknowingly woven itself into the fabric of my family’s health history without any of us knowing.
With any long-term condition, I think you go through the Kubler-Ross five stages of grief. For me, this is the best way of summing up my experience:
- Denial – could the doctor have made a mistake, or was this a temporary blip on my health radar?
- Anger – as time went on, my cholesterol levels didn’t improve despite dietary changes and exercise, I was frustrated.
- Bargaining – I explored every other alternative, including supplements, cupping, and oils. I thought maybe I could bargain with my genetics.
- Depression- this probably not so much, but it was more a heightened fear of the complications that high cholesterol could bring such as heart disease, strokes, and a shorter lifespan.
- Acceptance – My turning point came when following a test, we realised that my son had also inherited this through me, and it was now my responsibility to guide him through this journey.
I started to educate myself about FH, its risks, and the importance of managing it. If I was to share any wisdom about my journey so far, I would suggest the following considerations for clinicians to ensure the smoothest journey for patients:
- Shared decision making: The decision to use statins should be a shared one between the patient and clinician, with the clinician guiding and supporting rather than imposing ultimatums. Addressing hesitance towards long-term medications requires empathy.
- Increased patient empowerment: Resources like our West Yorkshire Healthy Hearts website provide easily understandable information in non-clinical terms. Patients are more likely to be engaged and adhere to medication when they are well-informed about their condition. Heart UK is also a great source of information, knowledge with guidance targeted at different ages plus for public and professionals.
- No one size fits all approach: Everyone is different. The person experiencing any side effects is the best judge of their experience. Patients should be trusted and not made to feel invalidated when expressing concerns about treatment options.
- Listen to concerns: People taking statins have different levels of understanding and concerns about statins are more often rooted in personal experiences with their effects, not always in second-hand or diluted information from unreliable sources. Referring to google and such tabloids is patronising as this is not always where people get their information
- Difference between longevity and quality of life: The first is important to the NHS, the second is more important to people with a long-term condition. There obviously needs to be a balance between the two, and effective monitoring and building a strong patient rapport can avoid disruptions in medicine adherence if side effects hinder lifestyle.
Although I was initially hesitant about taking statins and confess to sometimes having a ‘one-two-miss-a-few approach’, I do know that they work, and I have seen the difference in my numbers between when I take them regularly to when I have had gaps of non-adherence.
I’m glad I am now armed with the information and medication I need to manage this condition, now I just need to get to a place where I can find the balance between what suits my life and what works to treat the condition.
How can we detect FH earlier?
The important of early testing and screening is vital and I am pleased to share that Health Innovation Yorkshire & Humber is involved in the National Child Parent Screening Programme.
The national Health Innovation Network and NHS England are seeking GP practices to take part in an exciting new project giving patients the opportunity to participate in a child/parent screening service to identify children with FH through a simple heel prick blood test, taken at the child’s routine one year immunisation appointment.
If you are a practice interested in signing up for this across Yorkshire and Humber, then please get in touch with me for a conversation or more information at email@example.com.