Resolución del Congreso de los EE.UU. sobre Hidrosadenitis Supurativa, (a) 'lo mío'

No es un placer comprobar cómo "lo mío" -"hidrosadenitis supurativa"- es un asunto que ha preocupado al Congreso de los EE.UU..

Las consideraciones políticas sobre "lo mío", realizadas por los representantes electos allá, me son muy dolorosas, tanto más por cuanto uno padece "lo mío" desde 1981, según confirman los registros clínicos. "Lo mío" se describe facultativamente, entre otros muchos, en estos dos trabajos:

2003 Hidradenitis Suppurativa de Gregor BE Jemec

2001 Investigation: Hidradenitis Suppurativa de Jan von der Werth

En esta entrada, directamente, no pongo fotografías sobre "lo mío": en estos días hay demasiadas e interesadas imágenes sobre el dolor de la carne...

En todo caso, agradezco el interés tomado allá y acá por "lo mío". Guardo registro de nombres y apellidos de quienes se han preocupado por "lo mío" y han actuado en mi favor. No se imaginan lo que he tenido que aguantar y a los que he tenido que aguantar. Me temo que seguiré aguantando: 'lo mío' es algo muy personal.

Con todo, sobre todo pensando en otros afectados, alivia saber que existe esta resolución política impulsada por The Hidradenitis Suppurativa Foundation, Inc. (HSF)


HRES 1037 IH
110th CONGRESS
2d Session

.. Session

H. RES. 1037

Expressing the need for enhanced public awareness of Hidradenitis Suppurativa, and for the support of the designation of a National Hidradenitis Suppurativa Awareness Month.

IN THE HOUSE OF REPRESENTATIVES

March 11, 2008

Mr. KAGEN submitted the following resolution; which was referred to the Committee on Energy and Commerce

RESOLUTION

Expressing the need for enhanced public awareness of Hidradenitis Suppurativa, and for the support of the designation of a National Hidradenitis Suppurativa Awareness Month.

Whereas Hidradenitis Suppurativa is a common skin disease affecting at least 1 percent of the general population, and data suggests that the number of individuals afflicted may be underreported;

Whereas Hidradenitis Suppurativa affects both males and females of every race and nationality, usually beginning in the second or third decade of life and often persisting into old age;

Whereas Hidradenitis Suppurativa is considered one of the most difficult and chronic diseases of dermatology, causing significant pain, disfigurement, anxiety, depression, temporary or permanent disability, and a severe reduction in quality of life, even for those with mild forms of the disease;

Whereas the time from disease onset to diagnosis is often measured in years or decades, greatly increasing the morbidity and complications of long-standing Hidradenitis Suppurativa;

Whereas there is currently no medical consensus on the definition of Hidradenitis Suppurativa, no standard method of diagnosis, nor any consistently effective treatment;

Whereas there is an urgent need to conduct systematic, large-scale research studies to discover the cause(s) of Hidradenitis Suppurativa and develop rational, evidence-based treatments;

Whereas because those afflicted with Hidradenitis Suppurativa see many different medical specialists, there is a critical need to educate all medical professionals in all fields about this disease;

Whereas because receiving early and appropriate medical intervention may decrease the morbidity of Hidradenitis Suppurativa, there is an essential need to increase awareness of Hidradenitis Suppurativa among the general public;

Whereas Mayor John Street of Philadelphia proclaimed June 2007 as Hidradenitis Suppurativa Awareness Month; and

Whereas the month of June would be appropriate to designate as National Hidradenitis Suppurativa Awareness Month: Now, therefore, be it

Resolved, That the United States House of Representatives

--

(1) supports the designation of a National Hidradenitis Suppurativa Awareness Month, to raise awareness regarding Hidradenitis Suppurativa; and

(2) requests the President to issue a proclamation designating such a month, and calling on the medical community and other interested groups to engage in educational activities and promote the need for further Hidradenitis Suppurativa research.