Why I Volunteer with LUPUS UK

Why I Volunteer with LUPUS UK

Ricky Chotai (LUPUS UK Trustee)

I am Ricky. I am 35 years old, and I’m a Lupus fighter.

At the age of twenty-five, I was diagnosed with lupus. It changed my life. But what is even more remarkable is that my mother faced the same battle in her mid-twenties.

For the past year, I have had the incredible opportunity to volunteer for the Board of Trustees at LUPUS UK. But my journey started five years ago when I joined a Lupus Research Study as a patient collaborator.

Volunteering allows me to be part of the solution. It gives me the chance to make a real difference in the lives of people going through similar struggles. I volunteer in memory of my mum. She fought so hard against lupus, and I want to honour her by continuing the fight and raising awareness. I am incredibly lucky; my employer encourages volunteering and even provides paid leave for it. They understand the value of giving back and supporting causes that matter.

So, whether you are a Lupus fighter like me or someone who wants to lend a helping hand, LUPUS UK welcomes you with open arms.

Join us. Your time, skills, and passion can truly be effective. Let us make a difference together.

Kirsty Noakes (Inverness)

I was diagnosed with lupus in 2011 after which I was pretty much left to my own devices. I had heard of lupus but apart from the pain and exhaustion I felt I actually knew very little about the condition.

It wasn’t until I heard about LUPUS UK and joined my local group I learned more about my condition, I wasn’t alone & it wasn’t ‘all in my head’. Without being part of the group, learning how they managed their condition, hearing about their experiences and having that support network has been invaluable.

I want to raise lupus awareness but more importantly, I want to support others and remind them there are people who understand, that they are not alone and that is why I volunteer.

John Webb (Cambridge)

My lupus symptoms escalated after I had glandular fever in 2005.  I was fatigued and not great to live with!  Positive ANA and ds-DNA tests resulted in a rheumatology referral.

I started my treatment with hydroxychloroquine, but it was slow progress.  I was medically retired from my IT management career of 32 years and have not worked since, with the resulting hit to my finances and the loss of personal contact. I could no longer play golf (my last round being Royal St. Georges in 2010, where I had to hire a buggy halfway around the course as I could not walk any further).

With nothing to do, I changed my sport to fishing with my grandson.  My grandson would carry the gear and set up, so all I had to do was cook and fish. I enjoyed spending weekends following my grandsons’ successful junior football careers – using a shooting stick and my fishing chair to watch, in comfort, from the touchline.

Following years without a holiday, we booked a trip to Edinburgh.  About to leave for the airport, I carried our bags down the stairs and fell, landing at the bottom. I was diagnosed with soft tissue damage until the phone rang at 01:30.  Maggie (my wife), took the call. “Can Mr Webb come back to the Hospital, his back is broken”, resulting in three months in a brace and surgery the following year.

During my recovery, I attended an information day run by the Cambridgeshire Lupus Group (CLG).  I met two ladies there – little did I know they would become my rheumatology nurses at the Hinchingbrooke clinic!

This was my first contact with the CLG; their chair at the time was Shelagh Cheeseman. I was impressed with the event and I contacted Shelagh a few weeks later, who suggested that I join the group at one of their “coffee and chat” mornings, which was held at a Cambridge garden centre. When I arrived, I saw a group of women, and Shelagh was immediately out of her seat and welcomed me to the group, and I felt comfortable even though I was the only man there.

Next, I joined LUPUS UK, and after a couple of visits to coffee and chats, Shelagh asked me to join the committee, who were keen to include me as a representative for the male members of the lupus community.

I took on IT responsibilities and became involved in producing the group’s newsletter. I created the presentations for the next information day, but unfortunately, I wasn’t able to attend due to a lupus flare and feeling “down in the dumps”.

My low mood continued, as I had a lot of time on my hands.  These episodes eventually led to me suffering a breakdown, which certainly changed my thinking on mental health!  I realised that I needed help, which came in the shape of cognitive behavioural therapy and medication.

When the treatment I received started to improve my depression, the committee work and the friendships that had grown as a result of it helped raise my mood further.

My work with the CLG committee was a reason to get on and do things.  This was Shelagh’s gift to me, and thankfully I have not had another episode since that time.

Being the only man on the committee is highly informative as it is never just lupus that is discussed. During committee meetings, conversation often includes discussing specific female issues that can result in “Sorry John” comments. We have a standing joke that I time the length of our meetings and coffee and chats until sewing is mentioned!

The committee are a great bunch.  I enjoy their company and consider them to be friends.  They are all quick to help with advice for lupus and other issues for anyone who needs it and are also there just for a chat if needed.

Being a volunteer, helping with events such as information desks at our hospitals and the flagship Information Days as well as fundraising events can be fun and, importantly, I feel that I am helping to spread the word that there is help available to our lupus community and their families and friends.

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