“HS does not come down to just boils and abscesses. It is a condition that can involve much more than just our skin. Having both a deep mental and physical effect on our bodies that first presents for us as children.”
Imagine being in a situation where doctors didn’t know what was wrong with you, let alone how to treat you. You’ve been very sick for most of your life without help or answers. Imagine this is your reality. You sit in pain not knowing what the diagnosis will be.
Many of us live this reality. Those like me who are challenged with Rare Disease or Orphan Disease.
Imagine when you finally search for answers after years of suffering, but there are none. Now, imagine you are in the position to help change that reality for yourself and others like you.
Wouldn’t you want to educate as many as possible so someone else wouldn’t have to suffer as you have and do? Would you want to help?
As a teen do you remember that first massively embarrassing zit you got on your face? The one you wanted to cover or get rid of however you could? Do you remember feeling so ugly and awkward about that new painful and foreign spot that everyone would be able to see as the first thing when looking at you? The painful spot that you had to pick and pinch until you felt relief due to the increasing pressure and inflammation building up? Maybe it was not just a painful massively embarrassing spot you need to cover up? Maybe you remember having something called a “boil” that would not go away, no matter how much you picked and prodded, it just got more painful and uglier?
Remember the feeling of constant pain and the ensuing frustration that came from a severe sunburn? Remember that first time and first sunburn that hurt you so bad you could not even wear a shirt and were afraid to touch your skin? Scared to touch it a certain way as it might aggravate the inflammation. Do you remember the copious amount of lotions or creams you used just for a few minutes relief from that pain you had never experienced before?
Have you ever had a tooth abscess and had to deal with a major infection in your mouth? The one that made it impossible to work, interrupting your every move and thought? Do you remember that familiar throbbing, pulsating, and ache that just won’t stop?
Now imagine all those things happening in the most awkward of spots on your body to deal with.
All of that pain and all of that frustration. But imagine if it never went away. Imagine if all that hard work you had to put in to get rid of those zits and boils went on forever. All of the cleaning, lotions, and medications for your sunburn and the broken tooth, that those times you used to feel better, imagine if they did not work, and your problems no matter what you did, always came back.
Imagine if when they came back, they came back more severe. Now let’s give a brief definition what my Orphan Disease is, Hidradenitis Suppurativa, or HS for short.
HS is a chronic inflammatory skin condition that has no cure. Adequate treatment that is consistent for all patients does not exist. Recurring abscesses, most commonly affecting the underarms, groin, buttocks, thighs, and under the breasts for women or on the chest for men are characteristic symptoms. What is often mistakenly called “boils” start connecting below the skin and form what is called sinus tracts. These tracts burrow below the skin leading to a more widespread affected area and severe disease progression. It is more common in women than it is in men, but it is estimated to affect 1% to 4% of the global population. Depending on what research studies you read that are available as published from different countries the number of patients like me across the world varies.
HS does not come down to just boils and abscesses. It is a condition that can involve much more than just our skin. Having both a deep mental and physical effect on our bodies that first presents for us as children, most commonly as teenagers when we begin puberty. HS then can progress and change with severity and activity over a lifetime as a chronic disease and progress to severe disease due to the lack of adequate treatment available for patients.
A lack of treatment available due to a rampant and historical public awareness issue.
My personal listed medical conditions are; Hidradenitis suppurativa (HS), Irritable Bowel Disease, Chronic Major Depression, Generalized Anxiety Disorder, Epstein Barr, Narcolepsy without Cataplexy, Ankylosing Spondylitis, and Fibromyalgia. I fear more could add to this list in years to come.
I have had pain and HS flares in places I never even imagined possible. Days spent in bed trying to rest as much as possible. Surgeries and procedures I could barely understand at the time let alone explain to others. Then there’s the depression and anxiety which comes and goes whenever it wants, never knowing why it’s there or how it went away and is also the same with my HS flares too. I don’t plan my life. My conditions make my schedule, forever having to accommodate what comes my way.
Think about the times before MRI’s, X-ray, and all the advancements in medical technology. Isn’t it wonderful how, for example, pneumonia is no longer a death threat? With antibiotic treatments and doctors able to recognize the diagnosis and prescribe a course of treatment to prevent such things. However, this is not the case at all with HS. Doctors don’t always recognize the symptoms of HS to properly diagnosis patients. Sepsis is a high risk within our community, which can be devastating to a patient’s’ health.
For these reasons raising public awareness for HS is extremely important and urgent for me.
HS is chronic, debilitating and at times an excruciating, painful skin condition. With all the advancements in technology, and more awareness being raised, it will bring more research resulting in treatment options. I self-diagnosed using the Internet and a Google search. I got lucky with my first dermatology appointment, where they confirmed it. This is not the case for many! Although my doctor knew what it was, treating HS is a completely different scenario.
There is no one single treatment that fits all, some doctors simply have never even heard of HS or know what it is. Obviously, this leads to many misdiagnoses.
Due to the locations of some of the areas affected by HS, patients are embarrassed or afraid to seek doctors advice from the start. In one of my experiences during a very bad HS flare, I decided to seek Emergency Care. The medical staff asked if I had been tested for HIV and were pumping me full of antibiotics. Just one example from a list of bad experiences where seeking treatment has scared the daylights out of me.
Unfortunately, several who have HS do suffer from other medical conditions as well, known as comorbidities. GI issues, Crohns, IBS, Achy muscles, Achy joints, Depression, Anxiety Disorder, PCOS, Rheumatoid Arthritis, Chronic Pain Syndrome, Chronic Fatigue Syndrome, are just a short few. Not everyone is affected by HS in the same way and not everyone has the same comorbidities, obviously, this makes treatment for HS a lot more difficult.
I compare my HS to that of an abusive marriage in two ways, mentally in a marriage where you love your partner so dearly but you sense something is wrong but you have no idea how to fix it, you try everything you can but it just doesn’t get better, feeling empty, lost and alone, like no-one would understand what you are feeling. And secondly physically, my HS, my partner, a part of me, occasionally it’s nice to me but other times it’s painful and deceitful, a marriage I wish to end so badly. Being abused by my HS over and over feeling there is no way out.
More understanding is needed and more awareness will achieve this. It could also affect my children mentally or physically, it could even affect your children if they’re diagnosed with HS, without you even having the condition yourself. So why shouldn’t others also be made aware of HS, just because it hasn’t affected them in some form?
Awareness brings attention to those individuals who have suffered for possibly years in silence because they were scared, embarrassed, or have not yet found medical care. Sometimes healing is slow. Sometimes the pain is unbearable. It is often exhausting and debilitating alone without the comorbidities that some of us also suffer from.
Awareness means more people will know what HS is, thus making lengthy, difficult explanations about it less necessary.
Awareness means less stigma, that more people will understand that no, we are not unclean, contagious, or just simply a misfit.
Awareness for HS means a lot to me because I want others to know they’re not alone. We can come together and make the best of the worst and hopefully make the worst a little bit better.
I didn’t ask for HS, none of us did. I did ask for a purpose though.
The purpose I have found now is to help others and to not hurt those who are hurting also. My passion, bringing more awareness to everyone about HS is being more fulfilled each day to which I am thankful, thankful to be on our mission together, thankful for being able to join an organization for HS awareness. I may not have taken the first steps, but I will take every step alongside those on the same journey, to which I’m honored to be a part of.
Sonya Lacy (Administrator of Operations and Human Resources (USA)): A 30-year-old mother of two and engaged to a very supportive partner Daniel, had onset of Hidradenitis Suppurativa at the age of 14, with a diagnosis around the age of 20. Sonya’s journey with HS has been a roller coaster ride through the years. Having one major surgery, several minor procedures, and countless medications prescribed, her suffering varies, as several comorbidities have accompanied her HS. After Sonya had to take a medical leave of absence in July of 2016, from her job, she found the need to file for Social Security Disability, since she was unable to return to work. Now on a mission for advocacy and to help others, she was presented the invitation and opportunity to join the organization from Ron and Fawn, which she gladly accepted, with a newfound purpose to fulfill!
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