Thanooshan was diagnosed with Addison’s disease in 2018 after going into an adrenal crisis. Less than a year later, he began his law degree at the University of Leeds. Here Thanooshan shares how he balanced his studies with his new health condition and Professor John Wass gives his advice, as well as our top tips for getting organised for university.

In 2023, the ADSHG was delighted to welcome Thanooshan as a Trustee. Thank you Thanooshan for your continued support and raising awareness for the Addison's and adrenal insufficiency community.

I joined ADSHG as part of their hardship fund initiative and it has provided me with a lot of support already in the form of a community and advice from fellow members and medical professionals. I would now like to share my experience, especially being one of the few young, Black, Asian and/or Minority Ethnic persons with the condition.

Getting diagnosed

Hi, my name is Thanooshan. I am a part of the small 8,400 person community in the UK who have Addison’s disease and a part of the much smaller community of young, male and Black, Asian and/or Minority Ethnic people with Addison's. I was diagnosed with Addison’s disease on January 20th 2018, 3 days after going into a full-blown adrenal crisis. Less than a year later, I began my law degree at the University of Leeds. 

My characteristics definitely caused a significant delay in identification and action. For almost a year, my symptoms were dismissed as signs of laziness and depression as it didn’t fit my age. Also, one of the key physical hallmarks for the disease is hyperpigmentation and as darker skin tones do not tan in the same way as lighter tones, this too was not identified. These initial dismissive interactions shaped the way I began to think of myself pre and post-diagnosis. 

[ADSHG Note: Pre-diagnosis symptom of increased pigmentation may be difficult to detect in people with dark skin tone. Therefore it is vital to check the inside of mouth and gums.]

Balancing university

Going into university, I kept this mindset of having to keep up with ‘normalcy’ and spent a great deal of my time trying to deny the fact that I was ill. It made having to take my medication at very specific times laborious and mentally draining to keep up with as every pill I swallowed was a constant reminder of my illness. 

It is no secret that Law is an academically rigorous subject, and it can place a lot of strain on an individual. This applies to many other subject areas as well. Due to my mindset, I was extremely harsh on myself. When my body could not deal with the stress, I called myself lazy and overworked myself. I would try to attend networking events, compete in negotiation and debate competitions, socialise and complete all of my reading/seminar work during the night as that is honestly the only time I had for myself at certain points of the first term. However, December soon arrived and I felt so broken that I almost made the decision to leave. In hindsight, I set myself up for failure but this is definitely due to the pressure that I felt to succeed as a young person. 

Reaching out

Luckily, I asked for help and scheduled a meeting with 3 staff members who were already a part of my journey. They helped me realise that taking it slower than others is perfectly normal. The message was very simple, but it was the first anyone had ever said it to me.

With the lethargy, bone pain, constant medication and fear of (another) crisis looming over you, it is very easy for young people with Addison’s disease to feel helpless. I certainly felt this way and it is quite literally impossible to do all of the things I mentioned above when you have to also deal with this. 

"The reason I could not comprehend this is because my disability is silent. It is not physically attributable, so it becomes difficult to justify slowing down when you look perfectly healthy. But it is necessary." 

As time has passed, I have come to accept that I won’t be able to rely upon last minute studying, enjoy heavy partying or even do all-nighters as it messes up my medication times. However, living a slower life isn’t all bad. I’ve had time to focus on my friendships, mental health and family. 

My second year of university came with the biggest personal challenges I have ever faced in my life (even greater than my own crisis) but my renewed sense of self has kept me much stronger through this process. They key is balance and adaptability."

Becoming an ADSHG Trustee

The Endocrinologist's view Professor John Wass, Chair of the Addison's Clinical Advisory Panel (CAP) and Professor of Endocrinology, Oxford University, gives his advice: "Thanooshan raises important issues, happily he describes the support provided by the ADSHG which in my view every person with Addison's in this country should belong to. He also highlights the important delays that some people find in the diagnosis. Quality of life on replacement therapy (with hydrocortisone, fludrocortisone and DHEA) should normally be reasonably okay and it is important to be followed up by an endocrinologist regularly and I would think that at least an annual review if not a six-monthly review is important. People should know the name of their endocrinologist and his/her contact details if they go into A&E so that he/she is contacted if they are in an emergency situation. Take into account the tips for getting organised for university by the ADSHG ahead of leaving, so you have peace of mind and are prepared as much as you can be, to help reduce stress where possible. Life should not be partyless! These things should be discussed with your endocrinologist."

ADSHG's top tips for getting organised for university.

• Move your care. Get registered with a GP in your university city and set up an appointment to meet your new GP.
• Contact student support at your university so you could tell them you have Addison's and find out what support you might be entitled to. Remember, telling your uni about Addison's doesn't mean it defines you. It just makes you safer and lets you enjoy everything student life has to offer.
• Apply for the Disability Students Allowance or DSA. This is a scheme that helps you cover some of the extra costs you might have because of a long-term illness.
• Chat with your new friends about Addison's, how it affects you, what they might need to watch out for and what to do if you have an adrenal crisis.
• Day to day life. Make sure you have a bag which can easily hold your key Addison's items for when you're out and about. A pill pocket, medic-alert bracelet, NHS steroid card and emergency hydrocortisone injection kit are vital items to always have on you. 
• Support. Log on to the “Young people and their families” section of the ADSHG online forum or follow us on Instagram, Twitter or Facebook, so you can vent or get advice when you need it.
• Be prepared. The odd bouncer on a night out may contest the tablets and injection kit you have in your bag or pocket. Do not let this dissuade you from carrying them with you at all times. You may never need them - but if you do, you couldn’t live without them. Just have your explanation prepared so you can rattle it off at a moment’s notice, thus not disrupting your evening. Learn more about hydrocortisone injection kits here.

Addison's disease can strike at any age - we're here to support you.

Visit our Young Persons page for more resources

 

Raising Awareness

To help spread awareness, Thanooshan spoke to his friend and medical student, Parmis Vafapouron, on her podcast She Became a Dr, to discuss his experiences with Addison’s and also the way it’s approached in medical school. Click on the link above to hear their conversation. Want to hear more from Thanooshan? Check out his personal blog.

Whether you're newly diagnosed or have lived with the condition for years - please join our community and support our cause! You'll receive the latest expert advice, guidance and ADSHG news, whilst being part of our inspiring and supportive community. Become a member today! 

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