Sailaja’s journey began when she developed a debilitating and distressing, rare neuro-immunological condition called Prurigo Nodularis almost twenty years ago.
Sailaja faced a diagnosis odyssey that lasted for nine years, learning the hard way that as a rare disease patient the system was not equipped with pathways for her. Once she received her diagnosis, Sailaja found that there weren’t any dedicated treatments or support for her condition at that point.
Sailaja went on to lead a Prurigo Nodularis support group of 5,000 global patients, which she subsequently established as a charity – Prurigo Nodularis International.
Sailaja has faced multiple challenges, as both a rare disease patient and charity founder, often finding the challenges seeming to pile up.
A few of these challenges involve not being taken seriously by clinicians, the rollercoaster ride of being able to achieve a diagnosis, not having clinicians with experience and expertise with Prurigo Nodularis, playing roulette with one empirical treatment after another, none of which were designed to treat Sailaja’s condition, while being subject to side effects.
As a charity founder it’s just the sheer uphill task you face. The lack of resources, funding, people, access to the expertise you need, of having to be a leader, while often having to literally run an organisation on what can feel like fumes, especially if you are a new organisation.
Having to become an expert in everything, in health technology assessments, in policy, regulation, how research works, in operations, in dealing with industry, so on and so forth. The list is endless. It’s not even a jack of all master of none situation, you actually have to become relatively proficient in many areas to run a small disease organisation.
How have you overcome some of these challenges?
“Umbrella organisations like Beacon are literally a lifeline for rare disease organisations.
The access to resources and community is fundamental, especially for small groups or organisations. The representation that organisations such as Beacon provide for us as a collective for wide reaching issues such as access to repurposed drugs is also key to helping move the needle for all of the rare community.”
How has Beacon supported you on your journey?
“Beacon’s support, specifically the mentorship programme has been absolutely pivotal. I was matched with a wonderful mentor, whose support and guidance was instrumental in my being able to successfully go through the Charity Commission process. Without the mentorship programme the Prurigo Nodularis community would not have its first patient led global charity.
Further to the mentorship programme, all the programmes that Beacon offers on its online hub and in-person training courses are immensely helpful in our day-to-day operations as well.
Beacon, the team and all they do makes such a difference for the rare disease community. In our case, we literally wouldn’t even exist as a formal charity to support our patients.”
Thank you to Sailaja for sharing her story, we’re excited to see what you and Prurigo Nodularis International does next!