The SSDI Blue Book is NOT aligned with a Hidradenitis Suppurativa patient reality

HSSUPPORT.ORG (2)

Disability Evaluation Under Social Security
8.00 Skin Disorders – Adult
8.06 Hidradenitis Suppurativa

“We use these listings to evaluate skin disorders that may result from hereditary, congenital, or acquired pathological processes. The kinds of impairments covered by these listings are: Ichthyosis, bullous diseases, chronic infections of the skin or mucous membranes, dermatitis, hidradenitis suppurativa, genetic photosensitivity disorders, and burns.”

*If you find your case was not properly executed against SSDI’s own listings get a lawyer.


The SSDI Blue Book is NOT aligned with a Hidradenitis Suppurativa patient reality and current medical research.



THE “FORMERLY” UNRECOGNIZED SEVERITY, PAIN, AND OTHER COMMONLY COEXISTING DISEASES OF HIDRADENITIS SUPPURATIVA (ACNE INVERSA)

 

The 2016 5th International Conference on Hidradenitis suppurativa or Acne Inversa:

“A current publication reported a delay of 7.2 years between the first signs of the disease and its diagnosis, a mostly critical period of time, which can lead to the known debilitating clinical picture.”

“Moreover, HS is the skin disease with the highest loss of life quality at the most productive age. The interest to the disease and the scientific work performed have grown exponentially. HS has found its home in dermatology.”

SOURCE: http://goo.gl/jaVNaT


European S1 guideline for the treatment of hidradenitis suppurativa/acne inversa:

“HS has the highest impact on patients’ quality of life among all assessed dermatological diseases.”

“HS is associated with a variety of concomitant and secondary diseases, such as obesity, metabolic syndrome, inflammatory bowel disease, e.g. Crohn’s disease, spondyloarthropathy, follicular occlusion syndrome and other hyperergic diseases.”

 

SOURCE: http://goo.gl/yztOup

 



HIDRADENITIS SUPPURATIVA “COMORBIDITIES”: COMMON COEXISTING DISEASES:
 

“The list of comorbidities associated with hidradenitis suppurativa (HS) is extensive, although these diseases do not necessarily share a common causality. Among the categories of comorbidities that are observed are obesity, other skin diseases, inflammatory conditions, and genetic disorders. Complications include scarring, restricted movement resulting from scarring and fibrosis in underlying tissue, conditions associated with obstructed lymph drainage, and psychosocial issues. Adverse effects on quality of life are common and may be severe, including unemployment, deterioration of family and other social relationships, and suicidal ideation. Clinical intervention for HS must include consideration and attention to these comorbidities and complications.”

http://www.ncbi.nlm.nih.gov/pubmed/25188459

 


PAIN AND A HIGH DEGREE OF MORBIDITY:

Hidradenitis suppurativa: a common and burdensome, yet under-recognised, inflammatory skin disease:

“Patients’ disease burden includes intense pain, work disability and overall poor quality of life. Although the clinical signs of the disease can often be hidden by clothing, active HS is associated with a malodorous discharge that contributes to the disabling social stigma.”

SOURCE: http://goo.gl/Hg4zaa

 Hidradenitis suppurativa: a common and burdensome, yet under-recognised, inflammatory skin disease:

 “Patients’ disease burden includes intense pain, work disability and overall poor quality of life. Although the clinical signs of the disease can often be hidden by clothing, active HS is associated with a malodorous discharge that contributes to the disabling social stigma.”

SOURCE: http://goo.gl/QOEaDu

Morbidity in patients with hidradenitis suppurativa:

“Although skin diseases are often immediately visible to both patients and society, the morbidity they cause is only poorly defined.”

 “HS causes a high degree of morbidity, with the highest scores obtained for the level of pain caused by the disease.”

“The mean DLQI score for HS was higher than for previously studied skin diseases, and correlated with disease intensity as expressed by lesions per month.”

“Hidradenitis suppurativa (HS) leads to painful eruptions and malodorous discharge and is assumed to cause a significant degree of morbidity.”

SOURCE: http://goo.gl/0VH68X

Painful hidradenitis suppurativa:

“Despite the severe pain associated with this disease, HS has been essentially ignored in the pain medicine literature.”

“The majority of patients rated their pain on a Numerical Rating Scale-11 ranging from 4/10 to 10/10 and described it at various times as hot, burning, pressure, stretching, cutting, sharp, taut, splitting, gnawing, pressing, sore, throbbing, and aching.”

 SOURCE: http://goo.gl/LLcedM

 

Pain management in patients with hidradenitis suppurativa:

“HS patients’ quality of life is severely impaired, and this impairment correlates strongly with their pain. Pain in HS can be acute or chronic and has both inflammatory and noninflammatory origins.”

“Sharp pain related to acute HS flares accounts for numerous emergency room visits.”

“For many HS patients, pain is a debilitating symptom that can lead to a severely impaired quality of life.”

“The European Dermatology Forum (EDF) guideline recommends the management of chronic pain in patients with HS according to the World Health Organization (WHO) pain ladder.”

“Inadequate treatment of pain may result in adverse events, anxiety, and depression.”

“There is a need for additional studies on pain management in patients with HS that should also take into account the contribution of comorbidities, including obesity, smoking, and depression.”

SOURCE: http://goo.gl/Wa41rk

 


 

PATIENT QUALITY OF LIFE:

Hidradenitis suppurativa markedly decreases quality of life and professional activity:

 “The results found for HS in our study showed greater QOL impairment than those found in some other dermatoses, including psoriasis, atopic dermatitis,acne vulgaris, alopecia, Darier disease, Hailey–Hailey disease, and even chronic urticaria. Wolkenstein et also noted a significantly greater HS impact on QoL than observed in chronic urticaria, atopic dermatitis, and psoriasis.”

SOURCE: http://goo.gl/jzAg4


Quality-of-life impairment in patients with hidradenitis suppurativa: a Canadian study:

The impact on QoL for patients with HS is extensive yet underestimated; quantifying and assessing the burden of disease for the individual and society will lead to establishment of funding priorities and greater awareness of this condition.”

 SOURCE: http://goo.gl/MdjHFU

Hidradenitis suppurativa:

“Hidradenitis suppurativa is a chronic relapsing disorder of the folliculopilosebaceous units (FPSUs). Its negative impact on quality of life is extreme, mainly due to the lack of early recognition, accurate diagnosis, and appropriate management.”

SOURCE: http://goo.gl/TJCFHU

 


MISDIAGNOSIS RESULTING IN PATIENT OVERBURDEN:
 

Hidradenitis Suppurativa: A Frequently Missed Diagnosis:

“Patients with HS have several challenges to their quality of life and activities of everyday living, including malodor, purulent discharge, and discomfort. There is often a delay in diagnosis and appropriate treatment.” 

SOURCE: http://goo.gl/9mQR8h

 Hidradenitis suppurativa: a review with a focus on treatment data:

“HS is associated with significant morbidity and health care costs.”

“HS may result in sinus tract formation and severe scarring, and is difficult to treat, with many patients never achieving complete clearance of lesions.”

“About one-third of HS patients report a family history of the disease, and families with an autosomal dominant mode of inheritance have been identified.”

“There may be a strong association between HS and Crohn’s disease – in a recent patient questionnaire of 1,093 patients with inflammatory bowel disease, 23% of patient responded to having signs and symptoms of HS.”

“Other diseases that may occur concomitantly include acne conglobata, dissecting cellulitis, pilonidal cysts, spondyloarthritis, pyoderma gangrenosum, and synovitis-acne-pustulosis- hyperostosis-osteitis (SAPHO) syndrome”

“Hypertension, metabolic syndrome, depression, anxiety, obesity and smoking are important co-morbidities among HS patients.1,18-20 Furthermore, smoking and obesity are not only predictive of disease severity but are also correlated with lower rates of disease remission.”

SOURCE: http://goo.gl/AWxdE9

 

Risk of Major Adverse Cardiovascular Events and All-Cause Mortality in Patients With Hidradenitis Suppurativa

“Hidradenitis suppurativa was associated with a significantly increased risk of adverse CV outcomes and all-cause mortality independent of measured confounders. The risk of CV-associated death was higher in patients with HS compared with the risk in those with severe psoriasis. The results call for increased awareness of this association and for studies of its clinical consequences.”

SOURCE: http://goo.gl/vJq1ZK

 

Acne inversa: difficulties in diagnostics and therapy:

“A potentially severe and chronic inflammatory disease with a significant negative influence on the quality of life.“

SOURCE: http://goo.gl/WwNanw

 



MENTAL HEALTH:

Depression in patients with hidradenitis suppurativa:

“The disease is often difficult to treat and patients experience a decreased quality of life (QoL). HS is a chronic skin disease with major impact on QoL even when compared to other dermatological diseases.”

SOURCE: http://goo.gl/oGJs3O

 

Depression is a frequent co-morbidity in patients with acne inversa:

“Severity of the disease, anxiety, sexual distress and acute inflammation may have an influence on depression.vHS/AI Patients have a higher risk of developing depression. 38.6% of patients are affected by depression compared to 2.4% of the other control subjects.”

SOURCE: http://goo.gl/iVRHzI

 

Recognizing and managing comorbidities and complications in Hidradenitis suppurativa:

“Adverse effects on quality of life are common and may be severe, including unemployment, deterioration of family and other social relationships, and suicidal ideation.”

SOURCE: http://goo.gl/kV0hK9



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