HS Survey Results May 2014

HIDRADENITIS SUPPURATIVA SURVEY RESULTS
MAY 2014
Author: Rocío Martínez Jareño

Sufferer of Hidradenitis

Survey of Hidradenitis Suppurativa Sufferers. April 2014
INTRODUCTION

This statistical study is based on a survey from 174 patients suffering from hidradenitis suppurativa
(HS). The questionnaire was made using the online tool "SurveyMonkey" during the months of
February and March 2014. To encourage sufferers of the disease to participate in the survey, it was
publicized at several associations of Hidradenitis sufferers and Facebook groups for people affected
by the disease.
The survey is divided into six sections:
1) General factors: age, sex, nationality, stage of disease, etc..

2) Types of treatments that have been followed and outcome of the treatments
3) Diet
4) Coexistence of other diseases (comorbidity) and family background
5) Psychosocial factors, including labour factors
6) Assessment of experiences with medical experts
Additionally, chapter 7 presents an informative compilation of side effects from typical treatments
for HS, using data from different sources.
Finally, at the end of the study a number of considerations and conclusions from the patient´s
perspective are presented.
The survey and the results presented here are for the use and benefit of patients of Hidradenitis as
well as medical professionals with an interest in the disease. Hidradenitis patients suffer the
consequences of ignorance of the disease, its causes, the disparity of treatment recommended, the
results of these treatments (most of them ineffective in the long-term) and their side effects.
Therefore, the purpose of this survey is to shed light into the darkness of our suffering. Also we
hope to disseminate as much as possible factual information about the life and the suffering of the
sick, from the patients’ perspective.
Author: Rocio Martinez. Sufferer of HS 2

1. GENERAL FACTORS
The following table shows nationality of the participants in the survey:
Table 1: Nationality
NATIONALITY Nº PEOPLE
USA 51
Spain 36
Britain 29
Italy 20
Others 16
Canada 6
Ireland 4
France 4
Belgium 4
Australia 4
Total 174
Of these 174 people who participated in the survey, 89% are female and 11% male.
Participants were asked about the stage of their disease, based on Hurley´s classification, as follows:
-‐ STAGE I: Abscess formation (single or multiple) without sinus tracts and cicatrisation.
-‐ STAGE II: One or more widely separated recurrent abscesses with tract formation and scars.
-‐ STAGE III: Multiple interconnected tracts and abscesses throughout an entire area.
The result is the following:
Table 2: Stage of disease
Hurley´s Classif. % Respondents Female Male
Stage I 10% 94% 6%

Stage II 48% 89% 11%
Stage III 43% 84% 16%
In the first group of questions related to "general factors" we asked about the current age of patients,
the onset age of the disease and the time it took to diagnosis. We also analysed what in many studies
are known as predisposing factors and / or triggers such as overweight, smoking habits and the
influence of moisture climates. The results are:

• The average age of respondents is 37 years old, being the youngest 14 and the oldest 58
years old.
• The mean onset age is 17 years old.
The following table shows the onset age distribution of the disease:
Table 3: Age at onset
HS ONSET
10 – 20 70%
21 - 30 years old 22%
More than 30 years old 9%
The average time to diagnosis is 11 years.
As for predisposing factors and/or triggers, these are the results:
Smoking Body Mass Index

(BMI)
22%
Smoker 33%
BMI <25
51% Ex-‐smoker
27% 67%
BMI >=25
No smoker
Figure 1: Smoking Figure 2: BMI
Moisture climate
I live in a
humid
47% climate
53% I live in a dry
climate
Figure 3: Moisture climate

2. TREATMENTS
This second set of questions reflects the experiences of patients with HS with prescribed treatments
and the patients’ assessment of the effectiveness of such treatments.
The classification of treatments is based on the article "Management of Hidradenitis" of Pedraza and
J. E. Daudénva of Dermatology, University Hospital de la Princesa, Madrid and published in Actas
Dermo-Sifiliográficas (2008, 99:101 - 10 - Vol99 No. 02).
The following table shows the number of patients who have been treated with each type of
medication.
Table 4: Treatments Followed
NO PEOPLE
CLASSIFICATION TYPE
TREATED
Bactericidal
113
antibiotics
Topics Cortioids 58
Retinoids 52
Intralesional Corticoids 44
Retinoids Isotretinoin 33
Tetracycline 81
Antibiotics Clindamycin 72
Others 89
Hormone Therapy Antiandrogens 30
Infliximab 10
Etacernept 4
Immunosuppressants
Adalimumab 3
Others 4
Small excision 74
Local excision and
Surgery 80
drainage
Radical excision 53
CO2 Laser 5
Others
Cryotherapy 2
Notably, few people have been treated with immunosuppressant’s drugs so the sample is not very
representative, nor are CO2 laser treatment and cryotherapy.

The following tables show the degree of effectiveness judged by the patients for each of the
treatments:

Table 5: Effectiveness of topical treatments
TOPICS
Bactericidal Corticoids Retinoids
antibiotics
Non-effective 35% 48% 54%
Short-term effective 24% 19% 19%
Medium-term effective 37% 28% 27%
Long-term effective 3% 5% 0%
Remission 2% 0% 0%
The two cases of remission with bactericidal antibiotics are for patients in Stage I. Moreover Stage II
patients also find this treatment mostly medium-term effective.
Corticoids and retinoids are valued as non-effective by 50% of patients in stages II and III.
Table 6: Effectiveness of intralesional and retinoid treatments
Intralesional RETINOIDS
Corticoids Isotretinoin
Non-effective 36% Non-effective 30%
Short-term effective 9% Short-term effective 21%
Medium-term effective 43% Medium-term effective 48%
Long-term effective 9% Long-term effective 0%
Remission 2% Remission 0%
One person in Stage II reported to have achieved remission thanks to the intralesional corticoids
treatment, although 40% of respondents in Stage III consider it as non-effective.
As for Isotretinoin, 46% of patients in Stages II and III consider it effective in the medium-term.

Table 7: Effectiveness of antibiotic treatments
ANTIBIOTICS
Tetracycline Clindamycin Others
Remission 0% 0% 0%
All types of antibiotics are mostly rated as non to medium term effective, with very low long-term
effectiveness.
Table 8: Effectiveness of immunosuppressant treatments
IMMUNOSSUPPRESSANTS
Infliximab Etacernept Adalimumab Others
Non-effective 20% 75% 33% 25%
Short-term effective 20% 0% 0% 25%
Medium-term effective 30% 25% 67% 25%
Long-term effective 30% 0% 0% 25%
Remission 0% 0% 0% 0%
Regarding immunosuppressants, the most representative sample comprises the 10 patients treated
with infliximab, 7 of them in grade III. 29% consider it effective in the long-term. Other
immunosuppressants have been used by very few patients, so the sample is not considered
representative.
Table 9 Effectiveness of surgical treatments
SURGERY
Small
Local excision and drainage Radical excision
excision
Remission 11% 4% 26%
Although most patients treated with surgery show an improvement in the medium term, it is
noteworthy that 46% of patients in Stage II reached remission with radical excision.
However, in the case of patients in Stage III, 46% of them rate surgery as an improvement in the
medium term and only 21% report to have reached remission.

In the survey we also enquired about the number of times that the patients underwent surgery, the
results being:
-‐ Average for small excision: 12 times;
-‐ Average for local excision and drainage: 9 times; and
-‐ Average for radical excision: 3 times.
Table 10: Effectiveness of hormonal treatments and others
HORMONE THERAPY OTHER TREAMENTS*

Antiandrogens CO2 Laser Cryotherapy
Non-effective 47% Non-effective 0% 0%
Short-term effective 17% Short-term effective 20% 0%
Medium-term effective 30% Medium-term effective 20% 100%
Long-term effective 7% Long-term effective 60% 0%
Remission 0% Remission 0% 0%
* Only 5 patients have followed this type of treatment
About hormone therapy in patients in Stage II, 50% of them consider it medium-term effective but
for those in Stage III, 55% consider hormone therapy as non-effective.
We also questioned patients which treatment is consider the most effective and the answers are
summarized in the next graph:
Figure 4: What do you consider the most effective treatment?
2% 1% 1% 1%
Surgery
2%
Any treatment works
3%
Antibiotics
5% Diet changes
Inmunossupressants
7% 41%
CO2 laser
7% Corticoids
Retinoids
Antiinflammatories
Hormonal
30%
LED
As can be seen the treatment considered most effective by HS patients is surgery, but it is significant
that 30% of the patients do not find any of the treatments effective.

3. DIET
We have noticed that in social websites it is becoming increasingly popular the use of different diets
and nutrition habits to improve HS, and in some cases patients report to have achieved remission.
Consequently, we decided to introduce a section about this topic in the survey.
43% of the 174 respondents are following some type of diet to improve HS and, as the next table
shows, the reported effectiveness of diets is greater than the one obtained with conventional medical
treatments:
Table 11: Diet effectiveness
Diet
Non-effective 11%
Short-term effective 8%
Medium-term effective 47%
Long-term effective 29%
Remission 5%
Table 12: Types of diets followed
TYPE OF DIET % Of patients

Paleo 8%
AIP (Autoimmnue protocol) 25%
Dairy free 16%
Gluten free 11%
Sugar free 7%
Nightshades free (*) 4%
Low fats 7%
Low calories 3%
Low carbs 3%
Others 15%
Not specified 16%
(* Nightshades are a group of alkaloids plants including tomato, eggplant, pepper, potato and
tobacco.)
We also asked about the effect of specific diets on the disease. The elimination of gluten, dairy,
sugar, nightshades or combinations thereof from the diet seem to be more effective, resulting in 9
cases of HS remission reported. We see this in the box below.

Table 13: Effect of different diets on HS
Gluten Dairy Sugars Nightshades Animal Fat Eggs Caffeine

Non-effective 18% 22% 13% 10% 38% 48% 47%
Short-term effective 9% 9% 10% 5% 15% 16% 20%
Medium-term effective 40% 42% 38% 36% 15% 16% 23%
Long-term effective 29% 24% 35% 45% 27% 20% 10%
Remission 4% 2% 4% 5% 4% 0% 0%
26% (45 people) of respondents are including natural supplements in their diet. We believe this is
due to the lack of effectiveness of conventional treatments. The main supplements reported are:
Table 14: Natural Supplements
Complement %
Zinc 33%
Magnesium 13%
Vitamin D 40%
Omega3 16%
Probiotics 20%
Turmeric 20%
Multivitamins 22%
The following table shows the degree of effectiveness that respondents scored the intake of natural
supplements.
Table 15: Effect of natural supplements
Effectiveness % Patients
Non-effective 22%
Short-term effective 18%
Medium-term effective 33%
Long-term effective 24%
Remission 0%
Patients who consider consuming supplements effective in the medium to long term are mainly
taking Zinc, Vitamin D and probiotics.

4. COMORBIDITY & FAMILY BACKGROUND

More than half (55%) of respondents suffer another disease besides the HS. The following table lists
the most common comorbidities. The existence of these diseases may have some relationship with
the HS or the side effects of medication used to treat HS.
Table 16: Coexisting Diseases
Type of disease %
Thyroid (Hypo or Hashimoto) 23%
Diabetes Type 2 15%
IBS 13%
Fibromyalgia 8%
PCOS 8%
Psoriasis 5%
Crohn Disease 4%
50% of respondents have relatives with systemic or autoimmune diseases. Notably, 36% have a
relative with Hidradenitis Suppurativa. It can be seen in the table below:
Table 17: Disease in relatives
Type of disease %
HS 36%
Diabetes Type 2 20%
Psoriasis 15%
Thyroid (Hypo or Hashimoto) 14%
Crohn Disease 6%
We also asked patients whether they had suffered from severe acne as a teenager and the result as
follows:
Severe Acne
Yes
27%
No
73%
Figure 5: Acne

5. QUALITY OF LIFE OF PATIENTS

The next set of questions in the survey is related to the quality of life of patients with HS. It can be
seen that is largely depends on the stage of disease. The results shown in the following tables and
figures are overwhelming. The lowest scores (quality of life) correspond to the responses of patients
in Stage I. We must remember that the majority of respondents are in Stage II or III.
The first set of questions is related to mood and physical condition and to what extent they affect
their relationship with others, including experts.
Table 18: Effect of HS on quality of life
Fear of Fear of
Anguish Low self-esteem
invalidity loneliness
It does not affect me 1% 1% 1% 5%

It affects me sometimes 8% 9% 9% 9%
It affects me relatively 28% 26% 30% 25%
It often affects me 25% 25% 24% 23%
It seriously affects me 38% 39% 37% 38%
Mistrust of social
Mobility problems Mistrust of doctors
relations
It does not affect me 1% 5% 1%
It affects me sometimes 9% 9% 9%
It affects me relatively 26% 24% 29%
It often affects me 25% 23% 22%
It seriously affects me 40% 39% 39%
Have you had or have anxiety Have you had or have depression?
disorders?
No No
23% 25%
Yes Yes
77% 75%

Figure 6: Anxiety Figure 7: Depression

Does HS prevent you from doing Is HS a problem in your
sports? relationships with your partner,
family or friends?
No No
23% 29%
Yes Yes
77% 71%

Figure 8: Difficulty to do sport Figure 9: Relationship difficulties
Is HS an impediment to your sex life?
No
22%
Yes
78%

Figure 10: Impact on sex life
In the section on quality of life of patients with HS we have also included work issues, as shown
below.
Table 19: Effect on work
Do you think HS affects Are you afraid of being fired Have you ever taken
your performance at work? because of the problems temporary sick leave
caused by HS? because of HS?
Yes 76% 44% 63%

No 24% 56% 37%

It should be noted that patients have reported requesting sick leave an average of 4.5 times per year.
We also asked participants if they ever claimed long-term or incapacity benefits because of HS (if
applicable to the labour and social protection regulations in their countries).
The result is as follows.
Have you ever claimed long-‐term sickness bene[its

because of HS? If so, was your claim acepted?
No accepted
No Yes 45%
81%
19%
Accepted
55%
Figure 11: Long term sickness benefits
Have you ever claimed incapacity bene[its because of

HS? If so, was your claim acepted?
No accepted
44%
No Yes
86% 14% Accepted
56%
Figure 12: Incapacity benefits

6. ASSESSMENT OF MEDICAL EXPERTS

This section of the survey addresses the relationship between medical experts, generally
dermatologists, and patients. Patients were asked to rate the knowledge of doctors of the HS, and
express their perception about the quality of the explanations they receive from the experts about the
disease and its treatments. The results are below:
Table 20: Rating of specialist
Rate the knowledge of your medical expert

% Rating
on the HS
1 - Total ignorance 18%

2 43%
3 22%
4 10%
5 – Expert 6%
Do you think doctors have Do you think doctors have

explained to you clearly explained to you clearly
what HS is? how the treatments work ?
23% 18%
Yes Yes
77% No No
82%

. Figure 13: Explanation of the disease Figure 14: Explanation of treatment
Do you think doctors have explained

to you clearly about the potential side
effects of treatments?
21%
Yes
No
79%

Figure 15: Explaining side effects

7. SIDE EFFECTS OF PRESCRIPTION DRUGS.

This is an informative annex with information collected from different sources about treatment’s side effects.
- CORTICOIDS:
These are some of the side effects:
-Effects on immunity: fungal infections are very common, especially Candida albicans.
Psychic-Effects: Some steroids cause irritation, restlessness, confusion, depression, poor concentration and
insomnia.
-Diabetes: Usually in persons with a family history. This can be very severe diabetes when corticosteroid
treatment is prolongued, sometimes with irreversible effects.
-Growth: In children they cause a significant delay in growth.
- Aesthetic-effects such as weight gain, hair on arms and legs, stretch marks ....
Source: "The adverse effects of corticosteroids, how to avoid and treat" By Dr.León Pecasse
http://www.zonade.com/accues/accusev/cronica/efect1.htm
- RETINOIDS: isotretinoin
Common: Extreme severe acne outbreak, dry skin, lips and mucous membranes, infection of the cuticles,
cheilitis, itch, rosacea, skin fragility, skin peeling, rash, flushing, nose bleeds, dry eyes diffuse alopecia areata,
eye irritation, conjunctivitis, reduced tolerance to contact lenses, elevated liver enzymes, permanent thin skin,
headaches, temporary or permanent thinning hair (this could start or continue after treatment), myalgia and /
or arthralgia, back pain and hyperhidrosis.
Infrequent: mild acne outbreak, elevated blood sugar, decreased libido or erectile dysfunction, increased
erythrocyte sedimentation rate and fatigue.
Permanent adverse effects

The following side effects have been reported to persist in some patients for whom there were even after
discontinuing therapy: alopecia (hair loss), arthralgias (joint pain), decreased night vision, inflammatory
bowel disease, keloids, osteopenia, hyperlipidemia, erectile dysfunction, psychiatric disorders, dry eyes and
"dry skin". It has been reported that high doses of isotretinoin cause rosacea. It is unknown how these side /
adverse effects may be permanent, but several studies have shown that isotretinoin induces apoptosis (cell
death) in various cells.
Other side effects of Isotretinoin:
- Atrophy of longitudinal growth: The medical guide for Accutane of the FDA declares that the drug "may
stop long bone growth in teenagers who are still growing."
- Teratogenicity (birth defects). Isotretinoin is a teratogen and is highly likely to cause birth defects if taken
during the pregnancy Some of the most common birth defects this drug can cause are hearing and visual
impairment, missing or malformed earlobes, facial dysmorphism, and mental retardation.

- Depression: Several case reports of depression, suicidal ideation, suicide attempts and suicide in patients
treated with isotretinoin have been reported to the System Adverse Event Reports U.S. FDA, with 431 cases
reported between 1982 and May 2001 - of these, 37 patients committed suicide.
- Crohn's Disease and Ulcerative Colitis: Several scientific studies have posited isotretinoin is a possible
cause of Crohn's disease and ulcerative colitis in some individuals. Have been made so far six trials in the
United States, with six resulting in multimillion lawsuits against manufacturers of isotretinoin; there are 4,000
additional cases pending.
Source:. Wikpedia http://en.wikipedia.org/wiki/Isotretinoin
- Antiobiotics
A study by researchers from the National Research Council (CSIC) and other research centres in Spain, has
found that treatments based on antibiotics can affect bacteria and enzyme molecules making up the intestinal
flora and microbial metabolic altering bowel patterns.
The research analysed the intestinal microbiota, employing stool samples from a patient who continued
antibiotic therapy, observed both during the administration of antibiotics, and after treatment with these drugs
reduces the ability of gut bacteria to produce proteins, and are also altered their metabolic capabilities.
Source (in Spanish): http://www.webconsultas.com/salud-al-dia/gastroenteritis/tomar-antibioticos-
puede-alterar-la-flora-intestinal-10107
As one of the most common side effects is diarrhea, it usually occurs when the antibiotic disrupting the
normal balance of the intestinal microbiota and anaerobic bacteria Clostridium difficile proliferates. Such
disturbances are not exclusive of the digestive system, since it adversely affects, for example the vaginal
microbiota as in the case of fungal infection
Source: Wikipedia. http://en.wikipedia.org/wiki/Antibiotics
Side effects of tetracycline
Common: Stomach discomfort. Diarrhoea. Itching in the rectum or vagina. Sore mouth. Redness or
discoloration on the foot
Uncommon: Severe headache. Blurred vision. Rash, hives or itching. Yellowing of the skin or eyes. Dark
urine or pale stools. Difficulty breathing or swallowing. Loss of appetite. Vomiting. Decreased urination. Sore
throat. Fever or chills. Stomach pain. Extreme tiredness or weakness. Stiffness or swelling in the joints.
Confusion. Unusual bleeding or bruising.
Source (in Spanish): http://suite101.net/article/tetraciclina-acne-dosis-indicaciones-y-efectos-

secundarios-a76456
Side effects of clindamycin
Common: Diarrhoea, nausea, vomiting and abdominal pain. It can induce pseudomembranous colitis due to
Clostridium difficile superinfection
Source (in Spanish): http://www.facmed.unam.mx/bmnd/gi_2k8/prods/PRODS/Clindamicina.htm
Uncommon: abdominal pain, flatulence, unpleasant metallic taste, generalized morbilliform rash,
maculopapular rash, urticaria, pruritus, vaginitis, exfoliative dermatitis, jaundice, abnormal LFTs, transient
neutropenia, eosinophilia, agranulocytosis, thrombocytopenia.
Source (in Spanish): http://www.onmeda.es/medicamentos/principio-activo-clindamicina-efectos-
secundarios-J01FF01.html

- Antiandrogens (Prociterona Acetate)

Common side effects: vaginitis (inflammation of the vagina), including candidiasis (yeast infection of the
vagina). mood changes, including depression; changes in libido (sexual desire).C efaleas, including
migraines (migraines), nervousness, dizziness, nausea, vomiting, abdominal pain, bleeding, stained, breast
pain, breast tenderness, breast augmentation, breast discharge, dysmenorrhea (painful menstruation), changes
in menstrual flow, changes in vaginal discharge and cervical ectropion (disorder of the lining of the cervix),
amenorrhea (absence of menstruation). fluid retention, edema (swelling), weight changes (gain or loss).
Uncommon: cramps, swelling, rash (urticaria), chloasma which may persist and increase in blood pressure.
Source (in Spanish): http://www.vademecum.es/medicamento-
acetato+de+ciproterona%2Fetinilestradiol+sandoz+efg_prospecto_68629
- Anti-TNF Immunosuppressants
The use of immunosuppressive anti-TNF may decrease the ability to fight infection and increase the risk of
contracting a serious infection, including viral, bacterial or fungal infections that can spread intense
throughout the body. These infections may require hospitalization and can lead to death. This includes minor
infections (wounds or open sores), infections that come and go (such as cold sores) and chronic infections that
do not go away. Also, the use of immunosuppressants can subserve the development of latent infections such
as tuberculosis or hepatitis B.
Some children, adolescents and young adults receiving immunosuppressive presented serious types of cancer ,
including lymphoma (cancer that begins in the cells that fight infection).
Source: http://www.nlm.nih.gov/medlineplus/druginfo/meds/a604023.html
Besides infections immunosuppressive anti-TNF can cause the following side effects:
-Stomach-ache
-Nausea
-Gastric-acidity
-Headache
-Nasal-secretion
-Back pain
-Itching, burning and vaginal pain or other signs of vaginal candidiasis
-Blush
It is possible that adults receiving immunosuppressive anti-TNF are more likely to develop skin cancer,
lymphoma and other cancers than adults who did not receive the drug.

CONCLUSIONS FOR SPECIALISTS, FROM A SUFFERER:

1 - The treatments do not work. At best they are temporary remedies and their side effects are too
harmful given the extent of success that treatments show. Patients should be informed well so they
can participate in treatment decision-making. We must assess rigorously whether the side effects
outweigh the temporary improvements.
2 - There is an overwhelming ignorance of the disease in the medical community and patients
perceive this, which causes more anxiety on us and distrust from medical specialists. Remember that
it is estimated that between 1% and 4% of the world population suffers from HS.
3 - You have to do more research in laboratory and less experimentation on patients. Of the many
studies I have read any shows that neither treatment is effective. Preliminary tests should be made
before prescribing medications.
4 - We need specialists in HS, medicine should not only be about prescribing treatments. You have
to do more tests, monitor the patients evolution, search for natural alternatives.
We need to know that the treatment that you prescribe is the most appropriate for each of us, so we
don’t feel that you are simply trying out to see how some treatment works.
5 - We need psychological support. The survey result are striking in this regard. Not we suffer
immense pain and limitation in our quality of life but also the uncertainty of how much and when the
disease may worsen, and this affects us emotionally and psychologically.
6 - We need the opinion and recommendations of nutritionists, diet is important. Why is no one
in the medical profession talking about the importance of nutrition to improve our condition? The
study we present here has not been made by physicians and it is not commercially driven, it is a
reality that can be seen in social networks. Diet determines the functioning of our immune system.
We know about this, please ask us!
7 – We do not know the cause of our disease, nor the cure, but together we can advance much.
We can be reached on many social forums and associations and we need your help. I strongly
encourage you to participate actively!!
The forums and associations consulted in this study:
-‐ ASENDHI: Spanish Association of Hidradenitis sufferers

-‐ British Association for Hidradenitis Suppurativa
-‐ Italian Association Reverse Onlus
-‐ Facebook:
o Asendhi
o Sobre la hidrosadenitis Supurativa Recividante Crónica
o Hidradenitis Suppurativa Support
o Hidradenitis Suppurativa - Global Support
o Hidradenitis Suppurativa Support Group
o The HS Diet Connection
o HS Elimination Diet
o Asbl La Maladie de Verneuil en Belgique
o Reverse Onlus

Written by Rocío Martínez Jareño.

HS Survey Results May 2014

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HS Survey Results May 2014

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HIDRADENITIS SUPPURATIVA SURVEY RESULTS

Author: Rocío Martínez Jareño

The survey is divided into six sections:

1) General factors: age, sex, nationality, stage of disease, etc..

Author: Rocio Martinez. Sufferer of HS 2

Table 1: Nationality

The result is the following:

Table 2: Stage of disease

Hurley´s Classif. % Respondents Female Male

Stage I 10% 94% 6%

Author: Rocio Martinez. Sufferer of HS 3

Table 3: Age at onset

The average time to diagnosis is 11 years.

As for predisposing factors and/or triggers, these are the results:

Smoking Body Mass Index

Figure 1: Smoking Figure 2: BMI

Figure 3: Moisture climate

Author: Rocio Martinez. Sufferer of HS 4

Table 4: Treatments Followed

Author: Rocio Martinez. Sufferer of HS 5

Table 5: Effectiveness of topical treatments

Table 6: Effectiveness of intralesional and retinoid treatments

Author: Rocio Martinez. Sufferer of HS 6

Table 7: Effectiveness of antibiotic treatments

Table 8: Effectiveness of immunosuppressant treatments

Table 9 Effectiveness of surgical treatments

Author: Rocio Martinez. Sufferer of HS 7

Table 10: Effectiveness of hormonal treatments and others

HORMONE THERAPY OTHER TREAMENTS*

Author: Rocio Martinez. Sufferer of HS 8

Table 11: Diet effectiveness

Table 12: Types of diets followed

TYPE OF DIET % Of patients

Author: Rocio Martinez. Sufferer of HS 9

Table 13: Effect of different diets on HS

Gluten Dairy Sugars Nightshades Animal Fat Eggs Caffeine

Table 14: Natural Supplements

Table 15: Effect of natural supplements

Author: Rocio Martinez. Sufferer of HS 10

4. COMORBIDITY & FAMILY BACKGROUND

Table 16: Coexisting Diseases

Table 17: Disease in relatives

Figure 5: Acne

Author: Rocio Martinez. Sufferer of HS 11

5. QUALITY OF LIFE OF PATIENTS

Table 18: Effect of HS on quality of life

It does not affect me 1% 1% 1% 5%

Figure 6: Anxiety Figure 7: Depression

Author: Rocio Martinez. Sufferer of HS 12

Is HS an impediment to your sex life?

Figure 10: Impact on sex life

Table 19: Effect on work

Yes 76% 44% 63%

Author: Rocio Martinez. Sufferer of HS 13

The result is as follows.

Have you ever claimed long-­‐term sickness bene[its

Figure 11: Long term sickness benefits

Have you ever claimed incapacity bene[its because of

Figure 12: Incapacity benefits

Author: Rocio Martinez. Sufferer of HS 14

6. ASSESSMENT OF MEDICAL EXPERTS

Table 20: Rating of specialist

Rate the knowledge of your medical expert

1 - Total ignorance 18%

Have you ever claimed long-‐term sickness bene[its

-‐ ASENDHI: Spanish Association of Hidradenitis sufferers