Sasha (31) is a brand manager based in London. 10 years ago, she was scheduled for a thyroidectomy due to an auto-immune condition. But a complication left her with hypoparathyroidism. 

"The condition means that I don't have parathyroid hormone, which regulates calcium levels throughout the day,” she said.

“Having an invisible condition means that often people don’t know when I’m experiencing symptoms or when I’m really unwell. Especially in the workplace, having to act normal and act professional, but internally I’m experiencing symptoms and need to seek treatment. That can be quite challenging.”

The most common cause of hypoparathyroidism is damage to the parathyroid glands during thyroid or neck surgery.

“The symptoms I experience when my calcium is low are stabbing and tingling under the skin, neurological issues, heart palpitations, and brain fog a lot of the time. And just feeling really weak. Then the symptoms with high calcium are headaches, sickness, and also neurological symptoms. These are things I experience daily.”

“It was really scary at first, and it’s taken me many years to properly understand. Sometimes, I’ve had to be my own doctor as well over the years. Now I’m at a point where everything’s a lot clearer, but there still needs to be better treatment.”

“Currently, the medication consists of an analogue vitamin D and calcium supplements as well. Even though I can take up to 8-10 tablets sometimes a day, this often doesn't really balance the low calcium. So, it’s rare that the medication gives you stable levels and it needs to be adjusted quite regularly.”

This inconsistency in Sasha’s treatment regime adds extra mental strain to a condition that already restricts her physical energy.

“It means that often I can’t be as active as I want to be, or I have to alter my diet and what I eat. When I'm not at work, I like to go to the gym, or see friends and family. But often I find myself just resting a lot, getting more energy for my working day. Especially with going to the gym, I have to plan that around my levels, rather than when I actually want to go."

“Often, I find myself just resting because, with the low calcium, there are days when I have no energy and I use most of my energy on going to work.”

“Even with treatment, sometimes I’ve needed to go to A&E to get an IV.”

“Even with treatment, sometimes – especially in the past – I’ve needed to go to A&E to get an IV calcium. This is when my levels drop too low, and medication can’t control it.”

While hospital visits are a major disruption at the best of times, they can be even more of a challenge in unfamiliar environments – as Sasha has discovered on more than one occasion.

“This year, when I went to Switzerland, I ended up in hospital. Last year, Miami – hospital. Turkey, hospital. Most trips I go on, I don’t know what it is about being in a new place. It can be hard going on holiday because there have been many instances where I’ve needed to seek medical help or get an IV calcium drip. So, I have to think about the country I’m going to and their healthcare system before I plan a holiday.”

“Ideally, I'd like to have flexibility over my work schedule and be self-employed.”

“Ideally, I'd like to have flexibility over my work schedule and be self-employed, so that when things become too physically demanding or if I have ’off days’, I can just work from home and be flexible with that.”

“So, I hope in the future there will be a more stable treatment, such as injections of the actual hormone that I'm missing. And it also would be really great to have a home tester for calcium as well."

“Make sure you know everything about [your] condition, because it’s widely misunderstood”

"My advice for someone that's just been newly diagnosed with hypoparathyroidism would be to be your own doctor and make sure you know everything about the condition because it's widely misunderstood."

“Often, I find doctors – especially in an emergency setting – they don’t fully understand it. This can make it hard for people to get help quickly. So, it would be great for there to be more awareness around this condition as well.”

“I view the disease now as a lot easier to understand compared to when I was first diagnosed. Because it’s such a complex condition that it’s taken me years to understand everything and the treatment.”

There are 7000 known rare diseases, but 95% still don’t have a cure or adequate treatment options. Rare diseases need more than rare solutions. That’s why Novo Nordisk is driving change to create a better future for people living with rare diseases.