Calling for More Hidradenitis Suppurativa Research!
Newsflash? Probably not. Rallying cry? Let’s hope so! “Hidradenitis Suppurativa needs more research!”
Of course, patients, caregivers, and advocates have been shouting this for years. But now an opinion written by two well-respected HS researchers from University of California San Francisco and Rockefeller University, who also happen to be on the board of directors of the HS Foundation, have published an editorial for JAMA Dermatology.
Partnership with patients in research and clinical care is desperately needed to meaningfully improve the lives of people suffering with HS. — Naik & Lowes
The JAMA editorial presents a compelling argument through comparison of the funding and number of publications and number of National Institutes for Health (NIH) grants for HS compared to psoriasis, eczema, vitiligo, and other dermatological diseases. Despite the mounting evidence that has shown that Hidradenitis Suppurativa is as common as these other diseases, the impacts on patient quality of life are far greater, and the number of other diagnosis that patients are developing (notable risk for depression, anxiety, suicide, and inflammatory bowel diseases) HS research lags embarrassingly behind with only 9 NIH funded grants compared to 4443 for the leader, psoriasis.
Now that we are beginning to understand the true and tremendous impact of HS in terms of prevalence, quality of life impairment, and comorbidity burden, we must extend our knowledge to understand how to best care for patients. — Naik & Lowes
Hidradenitis Suppurativa research is essentially where psoriasis was thirty years ago. Understanding of psoriasis has led to several FDA approved treatments, some of which are resulting in 100% clearance rates in some psoriasis patients!
Maybe this plea will be heard by researchers looking for a field where they can make a difference? Could this rallying cry lead to a better understanding of the true Hidradenitis Suppurativa causes? It is possible that the people someday responsible for the discovery or development the treatments that lead to our 100% clearance rates will get involved because of this call. Funding is often at the heart of it all – this is a strong argument to increase NIH funding and for profit-driven pharmaceuticals to invest in the (previously thought to be small) Hidradenitis Suppurativa market.
It is good to see that researchers who care are repeating what we patients have been saying all along: Hidradenitis Suppurativa needs more research! This editorial may finally result in our pleas reaching the right ears.
Isabel Mendez
Living HS for 40 years
Need resources Drs in Miami
Labtechs1
Living with HS for years prior to diagnosis 8 years ago. Basically told to live with it ! Need much more education and research to find something to work to avoid flareups, for a start! In Madison, WI
Amy
I’ve been living with HS for 35 years. No pharmaceuticals, creams, oinments have done a damn bit of good for me. I started medical marijuana 10 weeks ago, primarily 1:1 ration of CBD to THC tinctures. Within a few days my flares started shrinking, within a week I noticed flares only while I was showering but there was absolutely no pain. More research needs to be done on how to cure HS, but in the meantime, this has been my salvation and given me my life back.
Stephen D Carter
Amy, I am certainly interested with how the medical marijuana has been since your last report.
Lu
Sadly, marijuana is illegal in Virginia. How did you get a doctor to prescribe it? The three different dermatologists gynecologist, and PCP physician I have seen would probably laugh me out of their offices.
Kenisha Carroll
I’m Kenisha from Mobile Al & I have been suffering with HS for 12 yrs. Im turning 25 soon & I’ve been doing research & want to partner with someone else who has HS so we can fix it …we deserve answers & I’m going to get them.
Ashley
Hello to my fellow HS fighters. I am a newcomer to the HS struggling community. I am 20 years old, and I’ve greatly struggled with my skin since I started puberty at about age 11. A couple of years ago I took Accutane, and it was a total life changer with my acne and with my confidence, but an area on my chest that I had previously assumed was part of my bad acne never healed and stopped like the rest of my skin did. The area still constantly forms painful cysts and scars that seem to pile up on each other. Obviously it’s an embarrassing thing, and although I’ve been consistently going to a dermatologist since I was 12, I had never shown the dermatologist my chest problem until it failed to go away like my other acne had with Accutane. He didn’t know what it was, but another dermatologist I visited for the first time this last week immediately said it was HS. My treatment options were very extreme and limited, with no real cure. I could not help but burst into tears when I got out of there. It was definitely not the news I had hoped for. After doing some research about what little is known about this disease, I am filled with many mixed feelings on what treatment route I should take, if any. First off I am grateful I’m not alone in dealing with this, I thought I was just a freak of nature or something. Second I am grateful it isn’t worse, others struggle so much more and my heart really goes out to them. But third, I really hope we do find a cure in our lifetimes (but soon would be so wonderful). I have hope that they will find a way to help us as more of us who are struggling with this disease come forward with the need for research and a cure.
John
Went in for a recurrent cyst 2 weeks ago expecting a typical lance-and-drain. Doc took one look at the inside of my legs and said I have HS .. He operated on a bad pilonidal cyst I had 10 years ago – multiple onsite lancing, cauterization, 2 outpatients and 2 inpatients finally did the trick. 28 yr old male with no social-life as it is and now Doc is mentioning plastic surgery and skin grafts! Not interested at all. I’m 240lbs right now, I’m going to start off with going back to the gym and losing some weight, changing my diet, using powder and try to cut back smoking. If that doesn’t help, perhaps I’ll entertain surgery. It gives me hope to read these posts, especially from young adults such as myself. HS will not define me but it sure as hell has my arms in the air at the moment.
Muhammad Ali
I’ve had HS for over 13 years, the first 12 years, no one was able to diagnose it. Luckily one of my good friend was doing his fcps in medicine, he asked me to give him time to study more about it and finally came to the conclusion that this is HS.
Another doctor gave me retanoid, I’ve had cautery done in my armpits, I’ve taken those medicines and it’s much better(not gone), but the side effects are worse. Right now I’ve got ED, frequent headaches, muscle loss eyesight disturbed, mood swings, general body dryness, when I wake up in the morning, my lips are torn due to dryness.
My suggestion is to not just believe anything the doctors give you, but research the side effects of the medication yourself before you start taking it. All I’ve got from doctors is a reduction in my active lesions but a couple more severe problems to deal with now.
Terri
I remember having my first cyst at the age of 14. I’m now 41 and have multiple deep cysts at a time in multiple places on my body. I haven’t shaved in years and stopped using deodorant about 15 yrs ago as I noticed after using it I would get a breakout. I’ve had to surgeries on my breast due to the he, they were both from larger cysts from my armpit that grew into my breast. I was first diagnosed when I was 20 when I was pregnant with my daughter. At that time I gained a lot of weight and was also diagnosed with gestational diabetes. Prior to this I had never weighted over 100 lbs in my whole life. The Dr has told me it was a hygiene and weight issue which I knew was not factual because I had hs symptoms for 6 yrs before this. His recommendation was bleach baths and hibicleanse. After having my first child I lost the weight and was between 110-130 lbs for the next 5 yrs.. I still had hs cysts. They’re come and go but I started to develop them on other parts of my body. I wore loose fitting clothing and could not wear a bra or underwear because of it. I had literally NO answers about HS other than what I found online. Still to this day (different family doctor) I am told there’s nothing they can do and just to monitor the situation. I have not ever had a doctor lance or drain any other than the two surgeries I had. They always just tell me that if it doesn’t drain in it’s own or go away in four weeks then they’ll drain it. It’s extremely painful. I use warm wet compresses to help the drainage along but sometimes it takes weeks. Sometimes I can’t walk or move my arms because of the pain. I use epsom salt compresses, warm baths, charcoal and see salt baths. They haven’t ever prescribed me anything for them. No pain medicine, no antibiotics…nothing. I’ve never been referred to a dermatologist either. Reading this site and all of the comments I’m going to tell my Dr to refer me and if they don’t want to help me by giving me some strong ibuprofen or something then I’m finding a new Dr.. It’s hard to know how to stop something from happening if you don’t know what’s causing it. I’ve done diets where I stopped doing all dairy for a month, gluten, my sugar and carb intake has always very low other than an occasional treat as I’m diabetic. This business of not knowing what causes these outbreaks and how to deal with them with all of the advances and technology we have today doesn’t seem very logical or scientific. They should have funding from the government for research on every disease not just ones they think matters or where finding comes from private parties mostly. This disease makes it impossible to hold a job outside of the home and makes doing even the most mundane things hard. Getting dressed can even be a struggle, going it in public, going to a swimming pool or beach is out of the question and finding people to talk to about it is not easy. I’m hoping that the next generation will not have it as hard and there will be more research, education, and help for people with HS.
kaydeen
Im a sufferer of hs and information provided online about the disease is not completely accurate because we are experiencing other symptoms that doctors cannot explain. I am tired of being sick