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  • 1.
    Shayesteh Afshar, Alexander
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Dermatology and Venerology.
    Primary hyperhidrosis: prevalence and impacts for the individual2018Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Primary hyperhidrosis, excessive sweating, is a condition with unknown prevalence in many parts of the world. The disease debuts in adolescence and it affects men and women in equal proportions. A genetic background exists and the most common localisation on the body for excessive sweating is the axillary region. It is known that primary hyperhidrosis reduces quality of life and interferes with daily activities. Affected individuals often hide their sweating problems and the disease may lead to social withdrawal and isolation. Although botulinum toxin is an effective and available treatment, relatively few persons with primary hyperhidrosis seek medical healthcare and a minority of those are men.

    We investigated the prevalence of primary hyperhidrosis in Sweden and how the disease impairs quality of life, changes in daily activities, signs of depression and anxiety and alcohol consumption before and after treatment with botulinum toxin. The severity of hyperhidrosis according to the affected body sites was also investigated. Further on we explored mens experiences living with primary hyperhidrosis by interviews and content analysis.

    Our results showed that primary hyperhidrosis occurs in 5.5% of the Swedish population. The disease reduces quality of life and affects mainly the psychological health of the individuals. Persons with palmar and axillary hyperhidrosis rated their symptoms more severe and with much higher impact on their quality of life compared to persons suffering from hyperhidrosis elswhere on the body. Individuals with axillary hyperhidrosis more often reported a later debut and signs of peripheral vasoconstrictions were more common in this group compared to individuals with palmar hyperhidrosis. This made us believe that factors other than genetics seem to play a role in triggering axillary hyperhidrosis. Treatment with botulinum toxin A had a significant effect in reducing the symptoms and their interferences on daily life while increasing the overall quality of life. Signs of depression, stress and anxiety were also significantly reduced by treatment. This treatment was safe and no serious side-effects were noted. Qualitative content analysis of interviews with 15 men suffering from primary hyperhidrosis resulted in the theme: To be captured in a filthy body. The experiences of men with excessive sweating were thus interpreted as stigmatising. Stigma has a negative effect on mental health which reinforces our findings in quantitative studies when investigating quality of life. It is our assumption that the symptoms act as a vicious circle reducing quality of life, stigmatising the individual and limiting daily interactions. Addressing hyperhidrosis with information when the disease debuts in young people could reduce the stigma and enable early intervention via healthcare which may have a significant effect on the life of those affected.

  • 2.
    Shayesteh, Alexander
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Dermatology and Venerology.
    Boman, Jens
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Dermatology and Venerology.
    Janlert, Urban
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Global Health.
    Brulin, Christine
    Umeå University, Faculty of Medicine, Department of Nursing.
    Nylander, Elisabet
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Dermatology and Venerology.
    Primary hyperhidrosis: Implications on symptoms, daily life, health and alcohol consumption when treated with botulinum toxin2016In: Journal of dermatology (Print), ISSN 0385-2407, E-ISSN 1346-8138, Vol. 43, no 8, p. 928-933Article in journal (Refereed)
    Abstract [en]

    Primary hyperhidrosis affects approximately 3% of the population and reduces quality of life in affected persons. Few studies have investigated the symptoms of anxiety, depression and hazardous alcohol consumption among those with hyperhidrosis and the effect of treatment with botulinum toxin. The first aim of this study was to investigate the effect of primary hyperhidrosis on mental and physical health, and alcohol consumption. Our second aim was to study whether and how treatment with botulinum toxin changed these effects. One hundred and fourteen patients answered questionnaires regarding hyperhidrosis and symptoms, including hyperhidrosis disease severity scale (HDSS), visual analog scale (VAS) 10-point scale for hyperhidrosis symptoms, hospital anxiety and depression scale (HADS), alcohol use disorder identification test (AUDIT) and short-form health survey (SF-36) before treatment with botulinum toxin and 2 weeks after. The age of onset of hyperhidrosis was on average 13.4 years and 48% described heredity for hyperhidrosis. Significant improvements were noted in patients with axillary and palmar hyperhidrosis regarding mean HDSS, VAS 10-point scale, HADS, SF-36 and sweat-related health problems 2 weeks after treatment with botulinum toxin. Changes in mean AUDIT for all participants were not significant. Primary hyperhidrosis mainly impairs mental rather than physical aspects of life and also interferes with specific daily activities of the affected individuals. Despite this, our patients did not show signs of anxiety, depression or hazardous alcohol consumption. Treatment with botulinum toxin reduced sweat-related problems and led to significant improvements in HDSS, VAS, HADS and SF-36 in our patients.

  • 3.
    Shayesteh, Alexander
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Dermatology and Venerology.
    Brulin, Christine
    Umeå University, Faculty of Medicine, Department of Nursing.
    Nylander, Elisabet
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Dermatology and Venerology.
    Experiences of men living with hyperhidrosis: Content analysis of interviews with 15 men suffering from primary hyperhidrosisManuscript (preprint) (Other academic)
    Abstract [en]

    Primary hyperhidrosisreduces quality of life and interferes with daily activities of those affected.Data regarding experiences of men living with this disease is scarce. The aimof this study was to explore men’s experiences of living with primaryhyperhidrosis. Interviews with 15 men were performed at the Department ofDermatology and Venereology, Umeå University Hospital. Thetranscripted data was analysed by qualitative content analysis. The analysisrevealed one theme: To be captured in a filthy body which was based on five categories and 12 sub-categories. In men with hyperhidrosis there is a daily struggle to hide or to manage the excessive sweatingand the disease was associated with being unclean or filthy. Insufficientunderstanding from others and reminders of the symptoms can be stressful,contribute to a lower self-esteem and make the individual resign fore theillness. The disease is stigmatising and has a negative effect on daily life. Menwith hyperhidrosis also experienced a lack of understanding when they discussedthe sweating problems with family members. Our results reinforce publishedquantitative studies showing that the disease has an impact on the mentalhealth of those affected. It is unknown if women are approached in a differentway by family or society in case of disclosure. Further research in women couldreveal and possibly explain the disparity that exists between the genders in seekinghealthcare. Meanwhile public education and informing children at school, at anage when the disease debuts could decrease stigmatisation and increase thewillingness to seek professional help.

  • 4.
    Shayesteh, Alexander
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Dermatology and Venerology.
    Janlert, Urban
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Global Health.
    Brulin, Christine
    Umeå University, Faculty of Medicine, Department of Nursing.
    Boman, Jens
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Dermatology and Venerology.
    Nylander, Elisabet
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Dermatology and Venerology.
    Prevalence and Characteristics of Hyperhidrosis in Sweden: A Cross-Sectional Study in the General Population2016In: Dermatology, ISSN 1018-8665, E-ISSN 1421-9832, Vol. 232, no 5, p. 586-591Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Hyperhidrosis is defined as excessive sweating which can be primary or secondary. Data about the prevalence of primary hyperhidrosis are scarce for northern Europe.

    OBJECTIVE: Our aim was to investigate the prevalence of hyperhidrosis focusing on its primary form and describe the quality of life impairments for the affected individuals.

    METHODS: Five thousand random individuals aged 18-60 years in Sweden were investigated. The individuals' addresses were obtained from Statens personadressregister, SPAR, which includes all persons who are registered as resident in Sweden. A validated questionnaire regarding hyperhidrosis including the Hyperhidrosis Disease Severity Scale (HDSS) and 36-item Short Form (SF-36) health survey was sent to each individual. The participants were asked to return the coded questionnaire within 1 week.

    RESULTS: A total of 1,353 individuals (564 male, 747 female and 42 with unspecified gender) with a mean age of 43.1 ± 11.2 years responded. The prevalence of primary hyperhidrosis was 5.5%, and severe primary hyperhidrosis (HDSS 3-4 points) occurred in 1.4%. Secondary hyperhidrosis was observed in 14.8% of the participants. Our SF-36 results showed that secondary hyperhidrosis causes a significant (p < 0.001) impairment of both mental and physical abilities while primary hyperhidrosis impairs primarily the mental health (p < 0.001).

    CONCLUSION: Hyperhidrosis affects individuals in adolescence as a focal form while occurring as a generalised form with increasing age. Further, the prevalence of primary hyperhidrosis described in our study is comparable to other studies from the western hemisphere. While secondary, generalised hyperhidrosis impairs both physical and mental aspects of life, primary hyperhidrosis, with the exception of severe cases, mainly affects the mental health.

  • 5.
    Shayesteh, Alexander
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Dermatology and Venerology.
    Janlert, Urban
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Global Health.
    Nylander, Elisabet
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Dermatology and Venerology.
    Hyperhidrosis – Sweating Sites Matter: Quality of Life in Primary Hyperhidrosis according to the Sweating Sites Measured by SF-362017In: Dermatology, ISSN 1018-8665, E-ISSN 1421-9832, Vol. 233, no 6, p. 441-445Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Primary hyperhidrosis has negative impacts on quality of life. The aim of this study was to investigate whether the impacts of primary hyperhidrosis on quality of life are different depending on the localisation of the sweating.

    METHOD: We compiled background data, Hyperhidrosis Disease Severity Scale (HDSS), and Short-Form Health Survey (SF-36) post hoc results from 2 previous studies. Cases who described only 1 site as their most problematic area of sweating were included (n = 160/188) while individuals with multifocal primary sites of hyperhidrosis were excluded (n = 28/188).

    RESULTS: Individuals included were 11-62 years old with a mean age of 30.2 ± 10.4 years, and axillary hyperhidrosis (65.6%) was the most common type of hyperhidrosis. Comorbidities were more common when hyperhidrosis was reported in other than the axillary, palmar, and plantar regions. Excluding comorbidities showed the lowest SF-36 mental component summary scores for axillary (41.6 ± 11.6), palmar (40.0 ± 9.4), and plantar hyperhidrosis (41.1 ± 13.7). The HDSS showed the highest proportion of severe cases in axillary (60.6%) and palmar (51.5%) hyperhidrosis (p < 0.01) while mild cases were more often observed in plantar (60%), facial (83.3%), and other sites (85.7%) in primary hyperhidrosis (p < 0.01).

    CONCLUSION: Our results indicate that impairments in quality of life can be different depending on the manifestation of primary hyperhidrosis on the body. This can have an influence on how patients with hyperhidrosis could be prioritised in health care. Subgroup samples affected by facial hyperhidrosis and other sites of primary hyperhidrosis were however small, and more research is required to verify our findings.

  • 6.
    Shayesteh, Alexander
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Dermatology and Venerology.
    Nylander, Elisabet
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Dermatology and Venerology.
    Botulinumtoxin hjälper mot primär fokal hyperhidros: bra effekter - få biverkningar2011In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 108, no 47, p. 2433-2435Article in journal (Refereed)
    Abstract [en]

    En övergripande sammanställning av större randomiserade kontrollerade studier med avseende på botulinumtoxinets effekt på hyperhidros och livskvalitet saknas. Vår genomgång av  litteraturen visar att det finns god evidens för behandling av fokal (axillär) hyperhidros med botulinumtoxin A. Livskvaliteten hos de drabbade individerna ökar efter behandlingen. Ett observandum är att samtliga studier som uppfyllde våra fastställda kriterier sponsrats av läkemedelstillverkaren och att en författare återfinns i samtliga tre granskade studier.

  • 7. van Schaarenburg, R. A.
    et al.
    Schejbel, L.
    Truedsson, L.
    Topaloglu, R.
    Al-Mayouf, S. M.
    Riordan, A.
    Simon, A.
    Kallel-Sellami, M.
    Arkwright, P. D.
    Ahlin, A.
    Hagelberg, S.
    Nielsen, S.
    Shayesteh, Alexander
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Dermatology and Venerology.
    Morales, A.
    Tam, S.
    Genel, F.
    Berg, S.
    van den Berg, J. M.
    Kuijpers, T. W.
    Olsson, R.
    Huizinga, T. W. J.
    Lankester, A. C.
    Trouw, L. A.
    C1q deficient individuals have a wide variety of clinical presentation, quality of life and life expectancy2014In: Molecular Immunology, ISSN 0161-5890, E-ISSN 1872-9142, Vol. 61, no 2, p. 260-260Article in journal (Other academic)
  • 8. van Schaarenburg, Rosanne A.
    et al.
    Schejbel, Lone
    Truedsson, Lennart
    Topaloglu, Rezan
    Al-Mayouf, Sulaiman M.
    Riordan, Andrew
    Simon, Anna
    Kallel-Sellami, Maryam
    Arkwright, Peter D.
    Ahlin, Anders
    Hagelberg, Stefan
    Nielsen, Susan
    Shayesteh, Alexander
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Dermatology and Venerology.
    Morales, Adelaida
    Tam, Schuman
    Genel, Ferah
    Berg, Stefan
    Ketel, Arnoldus G.
    van den Berg, J. Merlijn
    Kuijpers, Taco W.
    Olsson, Richard F.
    Huizinga, Tom W. J.
    Lankester, Arjan C.
    Trouw, Leendert A.
    Marked variability in clinical presentation and outcome of patients with C1q immunodeficiency2015In: Journal of Autoimmunity, ISSN 0896-8411, E-ISSN 1095-9157, Vol. 62, p. 39-44Article in journal (Refereed)
    Abstract [en]

    Objective: Globally approximately 60 cases of C1q deficiency have been described with a high prevalence of Systemic Lupus Erythematosus (SLE). So far treatment has been guided by the clinical presentation rather than the underlying C1q deficiency. Recently, it was shown that C1q production can be restored by allogeneic hematopoietic stem cell transplantation. Current literature lacks information on disease progression and quality of life of C1q deficient persons which is of major importance to guide clinicians taking care of patients with this rare disease.

    Methods: We performed an international survey, of clinicians treating C1q deficient patients. A high response rate of >70% of the contacted clinicians yielded information on 45 patients with C1q deficiency of which 25 are published.

    Results: Follow-up data of 45 patients from 31 families was obtained for a median of 11 years after diagnosis. Of these patients 36 (80%) suffer from SLE, of which 16 suffer from SLE and infections, 5 (11%) suffer from infections only and 4 (9%) have no symptoms. In total 9 (20%) of the C1q deficient individuals had died. All except for one died before the age of 20 years. Estimated survival times suggest 20% case-fatality before the age of 20, and at least 50% of patients are expected to reach their middle ages.

    Conclusion: Here we report the largest phenotypic data set on C1q deficiency to date, revealing high variance; with high mortality but also a subset of patients with an excellent prognosis. Management of C1q deficiency requires a personalized approach.

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