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Rax

..it’s not the new treatment that fills me with optimism: it’s discovering this network of fellow LPDL patients that I’m most excited about. We all need to share our stories and provide support, guidance and positivity for each other. It’s a big ask, but let’s put the “try” into “triglycerides lip”-service to “lipids”!

I was diagnosed with Familial Hyperlipidaemia from birth after my mother recognised similar symptoms to those of my older sister who has the same condition.

Throughout my childhood, my diet was very strictly monitored and managed by my ultra-vigilant mother who succeeded in cooking the most delicious meals for us without a trace of oil or fat. Back in the early 80’s food labeling was unsophisticated and poorly regulated, which resulted in endless hours spent in supermarket aisles trying to figure out the true fat content of products that were often placed back on the shelf out of fear of being incompatible with our diets.

Chips, burgers and chocolate were annual treats and even then, in strict moderation. Skimmed milk was always difficult to source when spending holidays abroad and we often had to resort to packing powdered Coffee-Mate every time we left the UK.

Growing up in an Indian family also meant that my superhero mum had to figure-out how to replicate a range of delicious Gujerati dishes without using staple ingredients like ghee or coconut oil. Needless to say, she succeeded!

The problems for me started to emerge when I entered my mid-to-late teens. Social independence and peer-pressure made diet-control very difficult, particularly when university culture revolved around fast-food and alcohol. Pancreatitis became a regular presence in my early twenties and the episodes would frequently lead to hospitalisation and subsequent periods of anxiety and depression.

As part of my law degree, I was lucky enough to spend a year studying and working in France but the cheese-and-wine diet was too much for me to resist and the pancreatic pains grew in volume and intensity.

A decision was made just after I graduated to undergo a pancreatectomy as the damage sustained by the multiple chronic episodes (now in double-digits) had become too serious to ignore. The operation itself was fairly traumatic and complications mid-surgery meant that it was also necessary to remove my spleen and gall-bladder. I emerged from the experience heavily scarred (physically and emotionally) and having to deal with being diabetic.

During this period of my young adult life, I was lucky to have supportive friends, family and a loving girlfriend (now wife!) around me. Looking back, I could have probably avoided things getting to this stage had I had the self-discipline and awareness that I now have about the importance of healthy living.

Having turned 40 last year, I’m still not as conscientious about my diet as I could be but am continually striving to reach a balance between self-control and moderated indulgence. My wife and I are massive foodies and are always experimenting in the kitchen with new recipes and ingredients that don’t rely on frying or being basted in vats of butter! My wife is French, which means that creamy, gooey cheeses are often found lurking in our fridge, but I usually succeed in giving-in to temptation!

Finding this LPLD Alliance community has been incredible for me. I always felt isolated, different and stranded as a sufferer of Hyperlipidemia but having read the experiences of others on this website, I now realise that I’m not alone!

Recently, I’ve started Volanesorsen injections to see if the new medication can successfully and effectively reduce triglyceride levels. It’s still very early days but the future looks promising. However, it’s not the new treatment that fills me with optimism: it’s discovering this network of fellow LPLD patients that I’m most excited about. We all need to share our stories and provide support, guidance and positivity for each other. It’s a big ask, but let’s put the “try” into “triglycerides” and pay “lip”-service to “lipids”!

See you all around!

Rax