Dr Paola Gargiulo Maffei, psychologist and CMT patience, writes a fashinating book on feminine sexuality and Charcot-Marie-Tooth. “Sexuality is a fundamental requirement for the well-being of any individual – the author says – it’s game, relationship, pleasure, intimacy, all together. However the full expression of sexuality could be undermined by the presence of a chronic condition such as CMT”.

This book is the result of a long term and intense study directed by AICMT, the Italian association for Charcot-Marie-Tooth. Unfortunately, the book has been published in Italian only. If you would like to push a translation to other languages, feel free to contact us and we will forward all your messages every week to Dr Gargiulo.

At the moment you can order the book from the Italian editor SBC. Their website is no cutting edge technology, however they will donate any revenue of the book to the CMT research. That’s very nice and very rare for an editor, and we really appreciate. Thanks SBC!

SBC website has no specific page for their book, only a general url. So the only way to order the book is to go to the home page and put the title “Sessualità nella CMT” in the search engine (see image below).

If you want to be updated on the release of the English and Spanish version of the book, subscribe to our newsletter (in the right column). Until then, enjoy the Italian version.

Sexuality and Charcot-Marie-Tooth - Italian

 

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9 COMMENTS

  1. I guess sex with cmt should be very fatiguing for a man since they do all the moving. It’s good to be a girl after all, we just need to lay down and enjoy :p

  2. Great news. Finally a doctor is writing about a real issue and not just academic chromosome issues that doesn’t touch my (real) life at all. And the author is a woman, that’s even better. Thank you Dr Paola, please keep going. I can’t find your book for my kindle, but I support you 100%.

  3. This is the abstract of the article, recently published on the prestigious Journal of Sexual Medicine, reporting the results of the study described in the book. I hope it is of interest to the readers of this wonderful website on CMT.

    J Sex Med. 2013 Mar 27. doi: 10.1111/jsm.12126. [Epub ahead of print]
    Sexual Functioning in Women with Mild and Severe Symptoms of Charcot-Marie-Tooth Disease.
    Gargiulo P, Vinci P, Navarro-Cremades F, Rellini AH.
    Source
    AICMT-Onlus (Italian Charcot-Marie-Tooth Association-no profit), Collegno, Italy.
    Abstract
    INTRODUCTION:
    Charcot-Marie-Tooth (CMT) disease is one of the most frequently inherited neurological disorders, and while it is known that individuals suffering from this condition have low quality of life, little is known about their sexual function and satisfaction.

    AIM:
    To describe the functioning on different domains of sexuality in a relatively large sample of women with CMT, provide comparisons between mildly and severely affected patients and between women with the two different types of CMT (demyelinating vs. axonal), and assess the relationship between sexual function and age of onset.

    METHODS:
    Fifty-seven women (age: 18-60 years) were approached in a CMT rehabilitation clinic by a psychologist and administered the Italian version of the McCoy Female Sexuality Questionnaire (MFSQ). Data from 40 patients who had had sexual intercourse in the previous 4 weeks were analyzed.

    MAIN OUTCOME MEASURE:
    The main outcome measures are the factors MFSQ-SEX and MFSQ-PARTNER, which describe sexual functioning and sexual satisfaction with a partner, respectively.

    RESULTS:
    Almost 30% of women did not engage in sexual intercourse with a partner. Overall sexual problems were more prominent in younger women and tended to be lower as age increased: this pattern was different from what was reported in previous studies in comparable samples of healthy Italian women. Severity of CMT was associated with better sexual functioning in the areas of desire, arousal, orgasm, and satisfaction, with women with more severe symptoms reporting greater functioning. Women with more severe CMT symptoms reported more pain during intercourse. Age of CMT onset and type of CMT (demyelinating vs. axonal) were not associated with differences in sexual functioning.

    CONCLUSIONS:
    Findings point to the importance of including assessment of sexual dysfunction in young women with mild CMT symptoms and the importance of providing sex therapy or counseling to these patients.

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