Living Hell: Hidradenitis Suppurativa
Hidradentis Suppurative is a depleting autoimmune disorder that mainly affect the skin and sweat glands. Areas of the body most affected are underarms, under the breasts, inner thighs, groin and buttocks. This disorder manifests itself in the form of boils, swellings, open wounds, cysts and cuts. The immune system attacks these areas causing damage to them. There is a risk of developing squamous cell cancer because of this. A continuous damage to the cells in these areas could potential cause DNA damage, which in turns becomes malignant.
Such a disease is deteriorating for the patient physically and psychologically. There is no known cause nor cure for this disease. The open wounds and cuts are usually continuously bleeding and discharging. This produces foul odor as well. Sufferers isolate themselves because of many aspects of this disease.
It is extremely painful requiring prescription pain killers, such as codeine and morphine, on daily basis to be able to have minimal function. Movement such as walking can make the pain worse, let alone any form of exercise or work. Sitting can make the pain worse so going to school and even riding the bus is to be avoided.
When everything a person does causes pain a person would be more inclined to not bother with any of it. Social life is almost non-existent for most HS sufferers.
HS is a crippling disease which renders its sufferer incapable of taking care of themselves. There many stories of people losing their jobs, homes, and marriages because of HS. Having HS is similar to a life sentence. It is a lifelong struggle to no end. Patients’ lives are centered around the illness and dealing with it. You can not work because of HS. You can not go out because of HS. You can not date because of HS. You can not have any plans, dreams, or ambitions while dealing with HS. I am not saying one should not try. What I am saying however that dealing with HS will consumes anyone’s time and soul. Existing becomes a hassle. You learn to forsake any wants and needs you previously had. [Source]
This disease is recognized as disability in many countries. In the Middle East it is even grouped with Cancer within “Cancer and Cancer-related Illnesses” category. This illness is linked to Crohn’s Disease and the two of them are known to occur together in some cases. The treatments used for HS differ and range from antibiotics to chemotherapy. Harsh treatments include:
- Linezolid, a strong antibiotics used for treatment-resistant-infections. $100 a pill, 2 pills a day.
- Prednisone, a form of steroids used to deal with HS inflammation flares. $450-$600 a month.
- Isotretinoin, retinoic acid used as cancer prevention and as a treatment to HS boils and swellings. $450 a month.
- Infliximab, chimeric monoclonal antibody against tumour necrosis factor alpha. $100,000+ a year.
- Methotrexrate, a form of chemotherapy used in this case as an immune suppressant in small doses. $50-$100 a week.
These treatments are considered a last resort solution. A patient would have gone a year or two taking all kinds of antibiotics, which do nothing by the way. There is no guarantee of these treatment to help either. The reason they are considered last resort is their harsh and taxing effect on the body. A patient undergoing these treatments are expected to have someone taking care of them.
Another treatment is surgery. The surgery is not to fix the immune system from doing what is doing. However, it is to remove the damaged skin, tissues, glands, etc by excision. The goal of this is to reduce the suffering of the patient as damaged areas cause a crippling amount of pain. Another goal here is to reduce the chances of cancer by removing damaged areas which are most likely to develop squamous cell. [Source]
The disease progression is categorized in 3 stages.
Solitary or multiple isolated abscess formation without scarring or sinus tracts. (A few minor sites with rare inflammation; may be mistaken for acne.)
Recurrent abscesses, single or multiple widely separated lesions, with sinus tract formation. (Frequent inflammation restrict movement and may require minor surgery such as incision and drainage.)
Diffuse or broad involvement across a regional area with multiple interconnected sinus tracts and abscesses. (Inflammation of sites to the size of golf balls, or sometimes baseballs; scarring develops, including subcutaneous tracts of infection â fistula. Obviously, patients at this stage may be unable to function.) [Source]
There are many other complications of HS, especially in Stage III. The most feared one is Squamous Cell Cancer. However, even the other complications are fearsome and concerning. Some possible complications and related illnesses include:
Inflamed epidermoid cyst
Insomnia (due to the pain)
And this is just touching the surface of what I am going through and dealing with on daily basis. I can barely have energy to exist, let alone working, studying, reading, writing, or even playing video games. Even listening to music is not enjoyable anymore. I have been continuously checked for many of all the diseases mentioned above. I show early symptoms of many of them according to my doctors. I have been checked for Myocarditis, a heart autoimmune disease as well. It was difficult to determine if I show symptoms of it or not.
You know by now that my skin is severely damaged and causes me a lot of pain. My damaged nerves come second to that. I have to take nerve pain medications to deal with that on top of my daily doses of morphine. It is not a fun day when I have to do that. I suffered from a silent stroke last year. I had to deal with brain zaps, electric shocks going through the nervous system, due to one medication I was taking. I fainted a couple of times due to the pain. Many nights I can’t sleep until I pass out.
My life is different from what I imagined it would be. I am not the same get-things-done-whatever-it-takes kinda person anymore. I am unable to enjoy anything. Dealing with pain all the time does that to a person. I might lose my testicles if the abnormal skin growth gets worse. Forget about sexual life. With all the disfigurements around my groins and scrotum, scars, cysts, open wounds, foul odor, and pain do not expect sexual activities will be enjoyable. They will be torturous. The area is sensitive to pain as it as without HS on top of it.
A typical day of my life is waking up in crippling pain. Reaching for my pain killers. Waiting for them to kick in. Using the washroom, which could be painful. Showering, since HS was bleeding and draining all night. Using hair dryer to dry my skin, a towel would irritate it.
Then struggling to do anything. Walking is painful so keep to minimum. Sitting is painful so alternate between sitting and standing every 10 minutes or so. I can’t hold things as they fall from my hands, my nerves are damaged. Focusing to read a book or watch a movie extremely difficult. The pain, depression, and anxiety make it very difficult. I can not leave the house, or at least keep to a minimum. At any time the bleeding could require more attention and I definitely wouldn’t want to be in public when that happens. I clean my skin and change my clothes 2-3 times a day. Each time I sit in front of my computer looking at all the Coursera/Udemy classes I signed up for I feel sorrow. There are many things I want to learn, many things I want to do. I still try to do them, though. I am still doing my Data Science certification, although I am doing it very, very slowly.
Everyday is a struggle and a fight to live a life that is not worthy of fighting for, really. I think the only thing keeping me going is my stubbornness. I want to be a scientist, a researcher, and a designer. I do not care if HS is in the way. I am still working to be a Data Scientist, a Medical Researcher, and a Game Designer.
I always wanted to be a scientist, the universe interests me. I have a new-found desire to study medicine and immunology to help myself and others. I would love to touch the creative side of me and tell stories using interactive technologies. Perhaps I am not doing as well as I would like. Perhaps I am not learning as much as I would like. But I am still going. I survived so far. HS gets under my skin sometimes (get it?zing!), but I only give it the fuck-you attitude and keep pursuing what I want in life.
I started a free blog about my daily struggles with HS. I thouhght perhaps writing would be a form of therapy. Not to mention that my writing could somehow help someone suffering out there. Click Here to go to my blog page.
Grace was kind enough to start a GoFundMe campaign for me. The goal of the campaign is to help get the insanely expensive treatments needed to make feel a little bit better, hopefully. Click Here to go the campaign page.