“The best part of going public is the awareness side, so much is unknown and not talked about, it’s just great to get people talking!”
The patient story and experience of Nicole Cruickshank, a young 23-year-old woman who suffers daily with a debilitating skin condition known as Hidradenitis suppurativa (HS), has recently been picked up in media and of benefit to public awareness worldwide. Her story has been published several times in the media in her effort to raise awareness for this once thought to be Rare Disease.
I take this opportunity now to feature and share with you Nicole’s story within our own network and publishing voice at HSAWARENESS.ORG. She has not only made a huge contribution to the public awareness of HS by sharing her story in the media, but also within the patient community itself. Nicole’s sacrifice to her own privacy with selflessness and bravery has inspired others by the tens of thousands, myself included.
HS is a chronic inflammatory disease that affects the skin of patients in specific private and personal areas of the body.
Often and mistakenly called “boils”, HS can be described more accurately as chronic abscess like inflammatory events that develop for patients in their teenage years and progress with severity over decades if left untreated. Proper treatment for HS patients is rare as awareness for this disease is a global problem and has been historical.
The disease is defined by our own organization in a few short statements below that I have taken from our main website and read as follows.
Hidradenitis suppurativa (HS) is a chronic, relapsing and often debilitating skin disease.
It typically presents as painful, fluid-filled lesions that most commonly affect the armpits, groin, genitals, thighs and backside areas of the body, but can occur wherever there is skin. There currently is no cure for HS and a combination of medication, surgery and lifestyle modifications are required to manage the condition.
HS while not “rare” remains classified as an orphan or rare disease to this day in some countries worldwide, specifically the United States. The 0.08%–4% prevalence of patient population does not support most definitions for rare or orphan diseases. But, the unmet needs for patients everywhere results in an orphan disease unique reality. This is a tragic phenomenon in healthcare for a minimum of approximately 70,000,000 worldwide if going by just the minimum 1% prevalence.
Sadly, Nicole herself is currently suffering severely with active disease flaring on her inner thighs.
Like most HS patients Nicole’s history with this disease has affected her for many years. Onset for her was disease activity that only affecting her inner thighs at first, but over time, the disease has progressed or has ‘taken over’ other personal areas of the body.
Nicole lives with severe chronic pain as many patients with severe disease activity do as an unfortunate result.
When asked about the medical treatment she has received it was clear to me, as is to Nicole and HS patients everywhere, that public awareness issues that exist directly influence the lack of proper treatment that is and has been available historically to us. That in Healthcare the unmet needs of potentially millions of patients worldwide is nothing less than a historical phenomenon.
Nicole believes that these problems need to be addressed. That she can by sharing her Hidradenitis suppurativa patient story to raise awareness she will help to educate both the general public and medical professionals that we rely on so desperately for proper care and treatment to live with a decent quality of life.
I believe she already has helped. This is what Nicole had to say.
“Honestly it’s ridiculous that medical professionals by the masses don’t have the first clue about HS! I’m just given antibiotics and sent on my way! I’ve tried so many types and been on different types for months and months and nothing. I wish they would stop just throwing antibiotics at me.
I’m on my 3rd dermatologist and again she’s given me 8 weeks of antibiotics (ones I’ve already tried) even though I told her they honestly don’t work! She wanted to see for herself, however, this derm has said once I’m back after the 8 weeks she may try me on Isotretinoin, so that’s something different. I don’t receive any kind of pain management, they just give me codeine for pain and I hate taking codeine, I’m forever throwing them up.”
Whilst talking with Nicole I asked her how she was feeling now her story is out there in the public eye, and what kind of impact if any has it had within her own life?
“The number of people who have contacted me has been overwhelming, I’ve had so many people message me, spoken to lots of different people and made some great friends within the “HS family” online community. I’ve had people seeking advice, asking what treatments I’ve tried, where to go for treatments etc… and even people who had never even heard of HS, the online community or even what it was they had! That they have finally got a diagnosis themselves and can start talking to others who have the condition which is great to see – you don’t feel so alone when you can talk to so many other people with HS! “
Has this given you more confidence to talk about your condition more openly?
“Yes, I feel more confident since being so open about it, like many other people with HS I didn’t tell anyone for years I kept it hidden and suffered in silence. It was embarrassing and humiliating to me, and when I was hurting, I’d just make up that I had a bad leg or a bad arm rather than tell the truth.
But then I thought why should I feel like this, HS is not my fault and it’s a part of me! It can honestly take over my whole life and make me feel so useless, in pain and trapped in my own body at times, I was sick of hiding in the shadows. Once I got my diagnosis and got in contact with others with HS it was a massive turn around point. Now I will happily talk about it to anyone. I will not hide anymore and I hope if nothing else it inspires others with HS to do the same. There’s no shame at all in it, it’s a severe health condition and it should be talked about and recognized as such.”
Nicole should be extremely proud that she has made such a dramatic positive impact on people’s lives and the HS community within online support groups, but her efforts are not going to stop here. With her family involved they have some very exciting plans for the future of raising awareness.
“My family are hoping to do a sponsored blow up boat (dingy) journey 26 miles down the River Brue in aid of research and awareness for HS next summer. They need to check out whether it’s possible and doable first though, I will let you all know if they go ahead, my dad is leading it all bless him!”
Towards the end of our interview, I went on to ask Nicole what the best and worst parts of being so publicly open about her HS were.
“One point I did want to mention is that weight does not cause HS, lots of people are quick to jump and say it’s my weight, when yes my weight won’t be helping my flares, BUT it is not the underlying cause of it. – if anything my weight has got worse because of my HS – it is very hard to exercise with this condition for myself and many others.
The worst parts are the horrible uneducated comments like that, but honestly, they don’t bother me, you’re ALWAYS going to get people like that in the world.
The positive impact talking about this condition far outweighs irrelevant people who try to make you a joke.
They really are irrelevant when comparing them to how many people with HS that are thankful and that my story has helped, talking about it so openly feels great!
The best part of going public is the awareness side, so much is unknown and not talked about, it’s just great to get people talking! The more people talking the more awareness raised and the more chance of research and maybe even finding a cure!”
From one patient to another I have thoroughly enjoyed speaking with Nicole over the past few days.
I would like to personally thank her for her valuable time and positive perspective. Thank you, Nicole, for raising awareness for Hidradenitis Suppurativa (HS) public awareness worldwide. We wish you the best for your future projects and will be here with you available to help however we can! You can find links to Nicole’s other interviews in our previous feature titled, Nicole’s Hidradentis suppurativa (HS) Patient Story In The Media.
About the author
Kerry Adams (Creative Administrator of Special Projects): A proud single mother of three, Kerry lives in the south of the UK. As with the majority of HS patients, she lived without a name or answers for many years as a teenager as to why she was sick. This disease then became more of a major obstacle in her life in her mid-twenties, fighting through many years of minor surgeries and medications that didn’t work. She was finally given a diagnosis at 33 years of age. Due to her personal experiences with HS, Kerry easily observed a dangerous lack of awareness and wanted to make a difference. Learn more about Kerry by reading her personal Hidradenitis suppurativa (HS) patient story “My HS Battle“.
Tags: Patient Stories Rare Disease