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.
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.