Bit of an unconventional one, but we’re writing to make you aware of the potential for a UK based test. Dr Healy wants to proceed with a test for genital neuropathy in a small group of PFS, PSSD and PRSD (Accutane) patients.
Professor Healy has reached out as he has had difficulty obtaining a necessary adapter from the company, and as such he is asking for interested patients to email the company requesting that this is provided owing to the importance of investigation into the condition(s). Details of this are below.
As some of you are aware PFS patients with penile sensitivity loss, pain and/or atrophy have been assessed for nerve fiber density and structure, with no difference to matched controls on multiple-site biopsy of dermal prepuce in the past. However, there is some rationale for the possibility of small fiber involvement as a potential outcome and a cross-group finding would always be welcome in the effort to get these conditions under one roof. The benefit of this is that, should the adapter be provided, this would not cost anyone anything and is a non-invasive procedure to be carried out in Sheffield, UK. To be clear, this isn’t via the Foundation and is not diverting research funding, which we know is a concern. As such there’s nothing to lose.
If after reading you are interested in supporting Dr Healy’s efforts by emailing them, please make us aware that you have done so as Dr Healy would like to keep track of how many letters the company is getting. Additionally, please feel free to state your interest in attending. There is a target of 6 per group.
Thanks and best regards,
Hereafter follows part of a mailout from Professor Healy:
Several months ago, we became aware of a device called Sudoscan made by Impeto Medical. It’s mainly used to assess peripheral neuropathy in the hands and feet. The company also have a special adaptor for Sudoscan that can test genital function, but it’s custom-made and isn’t commercially available.
We are interested in Sudoscan and particularly the genital adaptor because we think it has a chance of showing an abnormality in PSSD that might allow people prove their condition exists – it has done so in the case of some diabetes patients – and might get research on a cure going.
One of the UK’s leading experts in peripheral neuropathy already uses Sudoscan and has agreed to help us test PSSD, PFS and PRSD patients if Impeto Medical can supply us the special adaptors. Unfortunately, they seem unwilling to do this and have stopped responding to our messages.
We need your help. We would like you to add your name, city, country, and the date to Letter 1 and email it to firstname.lastname@example.org.
If possible, we would also like you to get others involved. We’ve included an example letter that can be adjusted (Letter 2) for friends or family. If you come up with any good ideas on ways to drown this company in letters – go for it
CLICK HERE for a letter template provided by Dr Healy
MM DD 2019
Impeto Medical SAS
17, rue campagne Première
75014 Paris, France.
Dear Monsieur Calvet
I am one of several thousand people who have a range of enduring sexual dysfunctions stemming from antidepressants, isotretinoin, finasteride and possibly other treatments. I know there are others with my problem or a similar condition from at least 40 countries including France.
For nearly 30 years the number of us with these problems has been growing. We have been ignored or ridiculed by doctors and others we have sought help from. Many have already committed suicide or contacted assisted dying programs.
Having a test that confirmed the reality of our condition would make a big difference to the way others treat us. It might also trigger the kind of research needed to find an answer to what has happened to us and how to remedy it. Knowing this research was happening would save lives.
I understand your company can supply a device that can be attached to a machine you already market, a Sudoscan, that stands some chance of demonstrating the reality of the condition I have and in so doing might improve the care I get and my prospects of a cure. But I also understand you are not willing to make this available.
I would ask you to reconsider this position. I would imagine if you did, in addition to saving lives, you would likely get more Sudoscan sales. You might be interested to know that the European Medicines Agency has just announced that information about persistent sexual dysfunction after discontinuation of treatment is to be added to all SSRIs and SNRIs products.
I write in hope of a positive response, even though it appears from your lack of response to Dr Healy that you are not willing to engage with us.
Please note that this letter is confidential. My name and contact details are not to be publicly disclosed under any circumstances.