Subscribe Now

By entering these details you are signing up to receive our newsletter.

Turning the tide for rare disease

The Disability Policy Centre: putting accessibility and disability at the heart of legislation

Despite the challenges of living with Loeys-Dietz syndrome, a rare chronic condition, Celia Hensman has committed herself to improving the lives of all people living with a disability or chronic condition. In 2021 Celia founded the Disability Policy Centre (DPC), a think tank dedicated to the development and advancement of policy that ensures accessibility and disability are at the heart of legislation

Loeys-Dietz syndrome and me

My name is Celia Hensman. I am 25 years old, co-founding director of the Disability Policy Centre (DPC), a passionate accessibility policy campaigner, and, I have Loeys-Dietz syndrome. I live with the effects of rare disease and chronic illness every single day of my life, but I will not let this stop me.

Loeys-Dietz syndrome (LDS) is a connective tissue disorder that causes cellular genetic mutations, creating changes across the body’s tissue, such as the heart, blood vessels, bones, joints, skin, organs and muscles; in other words, everything in the body comprised of tissue. LDS is a life-threatening condition, with aortic aneurysms a daily worry, so early diagnosis and access to correct medical treatment is imperative. The first observations of LDS in 2005 were a crucial moment for patients who had been mistakenly diagnosed with isolated Marfan’s syndrome. However, because of its rarity and complexity, LDS is still a seemingly alien topic for the medical profession.

When asked to describe what is wrong with my body, I always say I think it would be quicker and easier to tell you what actually works. The answer to that is… not a lot. The list of conditions and symptoms associated with my LDS, such as POTS, arthritis, scoliosis, hypermobile organs and seizures, seems to be getting longer each passing year—it is fair to say that I lost the genetic lottery.

The most dominant, life-affecting manifestation of LDS for me is my intestinal failure. I am now nil-by-mouth, receiving all my nutrition and fluids and caloric intake by total parenteral nutrition (TPN), via a permanent Hickman line in my chest. This long, thin tube has been tunnelled under the skin of my chest, with one end inserted into a large vein just above my heart, and the other end exiting the chest.

When I try to explain to people that I am only able to eat and drink through my Hickman line, the look on their faces says a thousand words: pure shock at how anyone can function or, indeed, survive through daily infusions. I, too, am struck by how my heart is powering my survival in such an unusual way. After all, I eat through my heart, the very organ that will one day take my life.

I do not think I can describe in a single sentence how much having a rare condition has affected my life. From the endless appointments to the chronic pain, to the dreams left behind, to the activities not enjoyed, to the isolation at home as the world passes me by. Adjusting to mobility aids, having permanent tubes coming from God-knows-where, using accessibility provisions and needing constant care is mentally shattering, yet it has made me resilient and determined.

I am dedicated to establishing a system of correct care, access, equality and opportunity for all disabled people and people with long-term health conditions. It is vital that we encourage awareness of rare disorders such as LDS to improve care, understanding and equality of medical opportunities for patients around the world.

We must encourage people to share their experiences, expertise and knowledge as a united community striving towards a better and sounder future for those with complex conditions.

The Disability Policy Centre

Having worked in politics, policy and the charitable sector for a number of years, I have now experienced both sides first-hand: I have witnessed how policy is created without consulting disabled people and people with long term health conditions, and I have also seen the effects of this lack of consultation in my own lived experience.

Decisions are constantly being taken by individuals who do not have our lived experience and who do not consult properly with us—the people who live this reality every day. We are the best people to say what we need, and we must be allowed to speak for ourselves.

Disabled people and people with chronic illnesses are not only being limited by their conditions but are also being limited by the often inaccessible and unequal environment in which we live. My experiences living with a rare condition are driving me to see this eradicated in my work with the DPC.

The DPC firmly believes it can make an impact through collaboration. One in five people in the UK (20%) are disabled or living with a long-term health condition. For too long, their voices have been under-represented in the formation of policy and implementation of accessibility, and the DPC is working hard each day to change this. We are working to find practical solutions to change the lives of disabled people for the better, researching, influencing policy and implementing change.

Celia at the door of No 10 Downing Street for the launch of the Disability Policy Centre on 3 December 2021, the International Day of People with Disabilities

Society seems to dictate a set path, a journey we must all follow, with our lives planned out by age, promotion, partnership and purchase. Yet living with a chronic condition completely alters our pathway, seemingly steering us in a direction opposite to that taken by those around us.

We watch as doctors describe our fates—the operations, the degeneration in our conditions, the likely outcomes of treatments… We are bracketed as having a rare or a medically unknown or an uncommon disease. We are stereotyped as hindered, unable and incapable. Yet, having such a disease, despite the daunting negatives and labels being dangled in our faces, does not mean we should be unable to live life to the fullest. Ability and talent cannot be assumed based upon whether an individual has a medical condition or not.

I cannot emphasise enough that we can still follow our own journeys, set our own pathways and achieve against our genetic odds. Chronic health conditions endow an individual with a unique set of attributes, such as resilience, empathy, determination and the ability to think differently to others. We are unique, both genetically and in our characteristics, and our uniqueness must be protected, cared for and celebrated. The DPC is dedicated to ensuring disabled people’s needs in terms of inclusivity, access and representation are met.

“My rare disease is me. It is who I am and it has made me what I am today. I am determined to ensure that I leave this world in a better place than I found it.”

Links

thedisabilitypolicycentre.org


Skip to content