Hidradenitis Suppurativa: a Rare Disease_
Hidradenitis Suppurativa: a Rare Disease_

by


David Stearns





Historically, diseases are researched until a cure or treatment can be found. This is not the case for hidradenitis suppurativa. This is an insidious disease that is hidden from the public. The medical community is grossly untrained in recognition and treatment of the disease. The news media rarely does a story about hidradenitis suppurativa. Still, our government is aware of HS and is in the process of funding research and development of treatments. Moreover, sufferers of hidradenitis suppurativa are eligible for permanent Social Security disability payments, so why is this disease never spoken about_ With the misdiagnosis of the disease, how do we know that it is rare_


The sufferers of HS can become disabled to the point of no longer being able to work or participate in their normal daily activities. This is a skin disease which is characterized by boil-like lesions on the groin, buttocks, thighs, scalp, neck, nipples, penis, vagina, scrotum, under arms, and under the breasts. Although there are treatments available, there is no cure for the disease. Additionally, Research for a cure has not been an enduring process.


Furthermore, The pain associated with the disease is monumental. Consequently, pain medications are taken to allow the sufferer to function through their day. Hidradenitis can fatal, but this is in rare cases; and is usually due to anal fissure and or associated infections that actually do cause death. Could the areas involved with this disease be why we have so little information about it_



By definition a rare or orphan disease is a disease that affects under two hundred thousand U.S. Citizens (The Office of Rare Diseases 1). Moreover, hidradenitis suppurativa is one of many diseases, which are on the rare disease list compiled by the Office of Rare Diseases (Office of Rare Diseases 1). Funding for the rare diseases and orphan diseases has been largely neglected. Research is urgently needed in this area. Currently Senators Orrin Hatch and Ted Kennedy, have drafted legislation for the “Rare Disease Act of 2001” also know as S. 1379. This would provide much needed funding for research and development of a treatment and cure for Hidradenitis Suppurativa as well as numerous other rare diseases. The grant program would offer twenty four million dollars for “the development of diagnostics and treatments for patients with rare disorders, authorizes regional centers of excellence for rare disease research and training…” (“Sen. Hatch and Kennedy Introduce Rare Diseases Act” 1). California Senator Diane Feinstein cosponsors the senate bill, “which would establish a permanent Office of Rare Disease at the National Institutes of Health (NIH)….”(Feinstein 1).


Carol Ring, a sufferer of HS wrote to California Representative Ken Calvert. He responded to her request for action with:

Dear Ms. Ring, Thank you for contacting me regarding Hidradenitis Suppurativa. I Contacted the National Institutes of Health on your behalf. They are already studying the disease in their Arthritis, Muscular/Skeletal and Skin Disease Institute. This past year, the Institute spent $629,000 on research on H.S. and other skin diseases (Calvert 1).

The above mentioned funding is not nearly enough to find a cure. However, it is a beginning in the right direction. Perhaps more media attention would open the doors to additional funding for rare disease research. As a result, education for physicians is a critical factor in the proper diagnosis of this and other diseases. This is because many sufferers are not properly diagnosed for several years.


Additionally, studies of Hidradenitis Suppurativa at George Washington University have concluded that:

Hidradenitis Suppurativa is a chronic infectious process involving the apocrine sweat glands of the body. The ducts of the glands may plug up, allowing the bacteria within the duct to multiply and develop into and abscess. These may occur anywhere there are concentrations of these glands including the neck, axilla, inguinal region and, commonly the gluteal and perineal regions…. Hidradenitis produces abscesses that are often on the buttocks….
Abscesses may multiply in large numbers, and the locations can be in several different sites. Furthermore, Low dose antibiotics and removing the infected skin or incision and drainage are helpful. However, this is not a lasting solution. Reoccurrence of the lesions is common. (George Washington Medical Faculty Associates 1)


Another point of reference for describing Hidradenitis Suppurativa and treatments are from scholars at the prestigious Yale University Medical School.

…Although seen most commonly in young females in the axillae, it also occurs in the groin and perineum and the areolae. Early acute cases can be treated with local therapy, such as incision and drainage of the abscess, followed by control with long-term antibiotic therapy. However, once the disease entity is established with deep scarring and sinus tracts, the only appropriate therapy is surgical excision of the involved area…. Because of the acute pain and discomfort, it is very rare that a patient has to be convinced that a surgical procedure is necessary. By this point that patient has been through pain, anguish, and is very ready for alternatives (Yale University Medical School 1).


In addition a 33-year-old black male patient being seen by Doctors at the Johns Hopkins Hospital exhibited signs of not only Hidradenitis Suppurativa, but also Spondyloatrhropathy Arthritis. The two diseases are being connected together as opportunistic or related diseases. The patient presented rashes on his face, polyarthritis, and loss of weight. The patient had stiffness in his joints and abscesses growing under his arms, groin, and scalp. The attending physician stated that:



…In summary, we should learn two important points from this patient. First, the differential diagnosis of a patient with arthritis is best tackled by a systematic approach that emphasizes the joint pattern and the extra-articular manifestations. Second, Spondyloatrhropathy with hidradenitis suppurativa provides yet another clue to understanding the still dimly perceived connection between infection and inflammatory arthritis. It sometimes seems that in trying to help us understand this connection, natures has acted as and ever-resourceful partner in the game of biologic charades (Hellmann 3).


Additionally, Spondyloatrhropathy is now associated with hidradenitis suppurativa. There are many good reasons to find a cure for hidradenitis suppurativa. The answers found could greatly answer many secrets and open the door to curing more common diseases. “Will we finally get it_ Clearly, our guesses are getting closer, our understanding sharper. Perhaps when the charade is over, we will be even more convinced that rare diseases can teach general lessons”(Hellmann 3).


As we can see, this lack of understanding of hidradenitis suppurativa will cost tax dollars and possibly knowledge of how to cure other diseases. Many sufferers also refuse to see doctors for treatment out of fear that they may have a sexually transmitted disease and the shame associated with that. Continually, physicians have no idea what hidradenitis suppurativa is or how to treat it. Misdiagnosis can go on for many years. We must demand awareness for hidradenitis suppurativa and find the cause.


In conclusion, the cost of research is expensive but very necessary for not only the persons suffering from hidradenitis suppurativa, but for all people that are at risk now or in the future. It is important that every taxpayer in the country is made aware of HS and the ramifications of not funding the research. The costs associated for hospitalization treatments and care for sufferers of HS are astronomical. The cost of one surgery can be as much as $30,000.00, if hospitalization is required. The excision of skin and grafting are very costly. The costs of HMO’s are starting to rise higher each year, because of more people needing more care. If we eliminate HS it is plausible that we could effectively learn more about other diseases and find cures for them.


Sufferers of HS are eligible for permanent disability through Social Security. This helps to drain the system’s already rapidly decreasing funds. Consequently, hidradenitis suppurativa should to be recognized as a priority. New cures as well as new treatments and education for HS need to be addressed as rapidly as possible. The only question is, do we find cures for this disease now, or do we continue paying through the draining of the Social Security system and other public assistance programs_

Work Cited

Calvert, Ken. Letter to Carol Ring. 7 March 2002.
Feinstein, Dianne. Letter to author. 7 February 2002
George Washington Medical Faculty Associates “Hidradenitis” The George Washington University 06 September 2001 23 April 2002 .
Hellmann, David B. “Spondyloarthropathy with Hidradenitis Suppurativa” JAMA, The Journal of American Medical Association. 6 May 1992. v267 n17 p2363(3)
Office of Rare Diseases. “Rare Disease List” National Institute of Health 04 May 2002 23 May 2002 .
Ring, Carol. :Re ”Hidradenitis Suppurativa”. Letter to author. 12 March 2002
“Sens. Hatch and Kennedy introduce Rare Diseases Act of 2001” HD Lighthouse Organization 13 August 2001 5 March 2002 .
Yale University Medical School Yale University Medical School 8 April 1997 23 March 2002