Get to know CISFA UK and its members

‘An Interview With The Founder By Rebecca Cheatham
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In an open chat with the founder of CISFA UK, Joanne Kelly discusses the challenges and rewards of starting a new charity in her community.

 

“It first started January 1st, 2017, but officially registered on August 23rd, 2017.” Joanne Kelly, the founder of CISFA UK most commonly known as “Jo” sat opposite me in a café in the centre of Wilmslow, Cheshire. I asked how the charity was founded, Jo explained that she saw the gap of emotional support for those suffering with a chronic illness. For those who are a little uncertain ‘chronic illness’ is referred to as a long-term illness (more than six months) and this can cover a wide range of diagnoses. 

 

Chronic illnesses can be visible; however, some diagnoses can be invisible. Jo paused “if I took my heart support away - you wouldn’t be able to tell that I had an illness” she continued “most chronic illnesses are invisible.” Jo goes on to describe how invisible illnesses can have a stigma attached them, for example, individuals are often not believed about the level of pain they are in, or not understood. Jo says that this can further alienate our members, “CISFA want to spread the message that we are here to listen, and to bring everyone together.” 

 

“Whilst there is a lot of charities out there focussed on individuals suffering with mental health, or cancer for example, I felt there are limited resources for those with a chronic illness and that is how CISFA was born.” It is estimated that 15 million people in the UK have been diagnosed with a long-term illness. At the moment, Jo runs an online support group standing at 580 members.

 

As a new charity Jo discusses the challenges which she faces, “it is hard to gain trust especially in a tight-knit community.” Nevertheless, trust is becoming a challenging issue for most charities, especially start-ups. According to the Charities Aid Foundation it is believed that only 50% of the population trust a charity. The traditional ways of donating charities are changing, the increase in “street begging,” or “door-to-door” and not to forget the recent media attention are having negative effects on charity donations.

 

Hence, most charities are now turning their efforts online. CISFA UK recognises the need to go digital. However, this can have its drawbacks which Jo explains, “we held an online raffle, everything seemed to go well, we made money but unfortunately the cost of postage was too steep and we couldn’t post some of our items.”

 

The public are in more demand of visually seeing how their donations are contributing to their chosen charity. CISFA UK create care packages, you can nominate an individual suffering with a chronic illness to receive a ‘care pack’ (including novelty items such as books, soaps etc). As CISFA UK is ran by the chronically-sick these packages are extra special.

 

CISFA UK has come a long way from their online support group in early 2017. Jo listed off the notable events “becoming a registered as a community interest company with the council, presenting for Wilmslow’s friendship group in October, we also held a stall for the Cheshire socialites in November (it was at their dog’s tea party).” Jo mentions how they have gone from being an online community to hosting their very first community support group on the 13th February 2018 in Wilmslow.

 

“I have learnt a lot about business management.” Jo recently have taken on two students from Manchester Metropolitan University both studying marketing to help with raising awareness. CISFA UK has relaunched their website and have redesigned their logo, “I want the charity to be recognised and look professional.” At the moment, CISFA are building the foundations of their charity by re-focussing on their vision for the future. “I want it to look professional so we can to build awareness in our local community. Then we can start branching out into the rest of the UK.”

 

Jo mentions that one of the many goals for CISFA is “to go into colleges and universities to give presentations to students in the health sector about the emotional impacts of chronic illnesses.” At CISFA UK, in 2018 we aim to keep spreading awareness about invisible illnesses, “we will not stop until we have the best support for our members.”

Becky`s Story 

written by Rebecca Abery

Hi, 

I'm Becky and I have hidradenitis supparativa (HS), sometimes it feels like my chronic illness is how I should introduce myself!.

 

I first found a painful lump in my groin when I was 12 and out of embarrassment waited a long time to tell anyone.

In my 12 year old mind I thought I was dying of some sort of thigh/vagina cancer!

 

When I eventually plucked up the courage to say something to my mum I started the long road of misdiagnosis.

It was a long five years of being told I had everything from acne to herpes and also, if you can believe it, that I was attention seeking.

All the while my condition was steadily progressing.

 

I spent a lot of my teenage years scared of and hateful towards my body.

HS causes cysts in the apocrine glands (mainly armpits, groin and breast) up to tennis ball size which then drain.

The pain of a flare is indescribable, often leaving me bedridden and has the chance of infection such as cellulitis  (which I get on a regular basis!) and even sepsis.

 

As an orphan disease there was little research as it was considered "uncommon" and because of the lack of research patients all over the country were and still are being misdiagnosed.

 

After my initial diagnosis life carried on about the same, I tried countless unsuccessful treatments and eventually had to stop work and many of my hobbies, Oh how I miss horse riding!

I often felt hopeless, As I'm sure a lot of chronic illness sufferers do. I felt I had no prospects or hobbies to pursue and dating was an embarrassing nightmare!  

That leads us to three years ago, I met my now fiance and shortly after an amazing surgeon. The two things that changed my life completely!

 

My fiance, family and friends have supported me through two major operations removing both my armpits and replacing them with muscle and skin from my back (LD flap), although I still suffer with HS in my groin area I am happy to say I have been HS free in my arms for over a year!

One of the best moments of recovery was lifting my arm above chest height for the first time in 7 years! Definitely shed a tear of happiness that day! 

I have also started finding hobbies and career prospects that I can do either at home or have the freedom to take part in when I'm well enough. 

 

Us chronic illness sufferers have to find ways around things other people find easy and the effect on mental health can be intolerable.

 

Find joy in achievements no matter how small, seek positives in the little things and find support and understanding in any place you can for instance, CISFA UK

Annette`s Story  

Written by Annette Blagden

My name is Annette-Marie. I have just turned 50. I have chemo induced Peripheral Nephropathy which started about 7 years ago.. Basically nerve damage from all chemo, such as Cisplatin & Vincristine, I had to be subjected to, destroy late stage Rhabdomyosarcoma, a childhood bone cancer that wasn't spotted until I was 17. I was 21 when I went in remission weighing just 4 stone, with a part amputated right foot from destroying the malignant tumour and extensive damage to my uterus, cervix, womb and ovaries from all Radiotherapy, trying to shrink tumour at base of spine and 2 tumours in ribs, resulting in needing a hysterectomy last year. Peripheral Nephropathy causes burning in hands feet and right leg and lack of sensitivity, causing falls and clumsiness, and neuralgia to left or right side face. I take Gabapentin & Venlafaxine to help with pain, which causes short term memory loss, fatigue, etc, Algesal cream for my face. 

I take Gabapentin & Venlafaxine to help with pain, which causes short term memory loss, fatigue, etc, Algesal cream for neuralgia to face, and Propanolol for the anxiety and migraines it all causes. I also suffer high blood pressure, under active thyroid, costachondritis, msc (multiple sensitivity to Chemicals) and bouts of depression. To top all off I have osteo arthritis to knee, hips and base neck. There is no cure for Nephropathy, and no way of stopping it progressing or reversing any damage caused, here in UK, , but I understand they are undertaking ground breaking work in Switzerland, America and Canada using stem cell therapy, which I hope one day will be affordable and available on NHS to help the millions of sufferers in Britain.

Report Of Wellness Day 

As Written By  Susan Nelson

Body Mind and Wellness Day a Big Success

Seven generous practitioners and fourteen members of CISFA UK (Chronic Illness Support for ALL) came together for a Body and Mind Wellness Day held at the beautiful Stanneylands Hotel in Wilmslow yesterday. Joanne Kelly, the founder of CISFA, organised this event and produced a truly wonderful experience for all.

Participants enjoyed massage, reflexology, make-up and hair sessions, joined in armchair yoga and relaxation, and were introduced to the potential benefits of the Alexander Technique and the Emotional Freedom Technique through demonstrations and taster sessions.

A buffet lunch taken in the light and airy dining room leading on to the tranquil garden terrace was well enjoyed and special appreciation was evident for the gluten free selection and the afternoon tea cakes.

The feedback says it all:

“Very well organised and a great range of people and ideas.”

 “It actually exceeded my expectations. From start to finish everything was lovely.”

 “Thank you for a wonderful, magical, healing, beautiful day. So much love, connection and communication. CISFA has given me hope.”

 

CISFA is a not for profit organisation dedicated to supporting adults and teens living with chronic illness. The founder Joanne, a resident of Wilmslow, runs a weekly support group at ………………….. Call or email Joanne for more details. Email address, telephone number.