What Can I Do? An Action Guide For New Members

Hello,

If you are a new member suffering from PFS or an existing member wondering what steps you can personally take to get involved, help advance the issue and make your voice heard, please read the following guide.

Propeciahelp has been instrumental in initiating and supporting much of the work to achieve acknowledgement of and research into PFS. Staff and contributors from our patient community work determinedly to increase awareness and initiate more research into the underlying molecular mechanisms of the persistent sexual, mental and physical side effects following the use and cessation of Finasteride or other anti-androgenic endocrine disruptive drugs/substances.

Every patient who suffers from persistent side effects after the discontinuation of these drugs can help. Most actions take very little time and cost no or little money, but when performed by hundreds of patients these actions will deliver meaningful data and create a voice that cannot be ignored.

Report Your Symptoms

It is vitally important that all affected patients report their symptoms to their national bodies responsible for pharmacovigilance. Patient reports have already lead to increased warning labelling in various countries, and are essential for national and supranational interest in researching the issue further. If you have not submitted an adverse reaction report yet, please do so without delay. Please find a list of all regulatory agencies worldwide at the following page on our website:

Additionally, although clinical awareness is alarmingly poor, it is extremely important to make your doctor fully aware of what you are experiencing.

Join the Forum and post a Member Story

After reading and agreeing to abide by our Community Rules, Privacy policy and Terms of Service, please sign up to our forum. It is particularly important you make sure you are fully aware of the Community Rules as membership this forum is dependent on adherence to these simple guidelines.

Please first introduce yourself by sharing your story in the member stories category. Propeciahelp is a patient support forum and is a tremendous resource due to the volume of members’ experiences. It is valuable to share what you have personally experienced including your use, symptom onset and persistent symptoms. Do not be afraid to share your feelings and how your life has been affected in as much detail as you are comfortable with. If you are struggling to use the forum, please click here to watch the Discourse 101 introductory video.

Take the Post-Drug Syndrome Survey

It is crucially important that the broad and variable effects suffered are recorded to present an accurate picture of what is happening to patients through standardised data. Due to a historic failure of accurate diagnosis and follow up at the clinical level, the condition(s) currently termed PFS, PAS, PSSD, etc. depending on the drug taken can often be mischaracterised, with both scientific literature and the popular media prone to focusing on selected side effects (e.g. sexual dysfunction and depression) while omitting significant symptoms and characteristics.

The survey is open to members who have been suffering persistent symptoms for at least 3 months following cessation. Participating in the Survey takes around one hour. The survey can be saved at every step and you may complete it in multiple sittings.

Please click here to see how you can participate in the survey.

You can read more about the background and development of the survey by clicking here.

Keep up to date with the PFS Foundation

As well as our blog on www.propeciahelp.com, you can keep up to date with PFS-related news on the PFS Foundation website. The PFS foundation site also offers a catalogue of resources such as PFS related medical publications and a list of PFS-aware doctors.

Take a 23andme Test and submit your Raw Data

We intending to conduct a Genome-wide association study (GWAS) across patient groups based on the raw SNP data provided with the consumer genetic testing service 23andme. We are hoping to identify associated SNPs from the 23andme subset, and possibly observe similarities between those suffering the respective conditions at the genomic level. We hope that this information will help us and interested scientists to better understand possible underlying genetic susceptibilities relevant to the development of these syndromes. If the statistical analysis reveals interesting findings, we will endeavour to work with one or more scientists to help us deepen our investigation and publish the results in a peer reviewed journal.

To achieve this, we need your help. The statistical power of our analysis is directly linked to the number of participants. We need as many patient data submissions as we can possibly get. Please click here for additional background information as well as instructions on how to provide your data.

Create awareness and make your voice heard by joining our YouTube project

We are expanding to social media platforms including YouTube to help those who are interested in telling their stories share how persistent side effects from the aforementioned substances have affected their lives.

We hope this project can broaden awareness of the truth and the scope of this crucial public health issue - a problem that is too easily buried due to stigma, clinical ignorance and the powerlessness of isolation. Sharing stories together will allow patients voices to be heard in a coherent way and focus attention on the real human cost, and show that everyone affected is a very real and valuable person. Hopefully, as patients see others’ bravery in coming forward, it will be the tip of an iceberg.

To get involved, please see the following guide:

Spread the word

Please also consider asking other patients that you may know in your private life or from other forums, WhatApp chats, Facebook groups etc. to contribute to our projects. Every participant counts, and will help us speed progress towards a better future for us all.

Take care when reading other members’ posts

As PFS patients can often arrive in a desperate state, please read these words of caution. PFS patients are in very different conditions, and developing PFS can be anywhere from life altering to devastating. While some members have attributed improvements to various substances or lifestyle changes, these are not notably consistent over the many years, and there is no currently known treatment for PFS. User content on this forum should under no circumstances be considered medical advice and is not endorsed by the staff of propeciahelp.

The staff of propeciahelp wish to make clear that some PFS patients have exhibited an unusual and marked sensitivity to further substances with antiandrogenic effects, and in some cases have made their condition permanently worse in attempts at alleviating their existing symptoms. We are obligated to make patients aware as this has preceded patient suicide. Scientists investigating PFS have seen patients worsened by self-driven therapeutic attempts, and recently Professor R.C. Melcangi commented that “DIY” forum treatments risk doing further damage. Please bear this in mind when reading this - or any - patient forum.

The clinical endpoints in this condition can be very different, and it can be upsetting for some to read the experiences of the most severely affected patients. We therefore ask you to manage your own exposure and psychological responses. Please understand that patient experience varies considerably and reading the experience of another user does not mean that your symptoms and prognosis will be the same. Equally, please treat others with empathy - do not disregard the experiences of the most unfortunate patients with disparaging terms such as “horror stories”. Every person affected is a valuable human being.

Finally, we advise that patients focus on self care, and taking the proactive steps listed above. Patients routinely develop strong views as to the etiology of the condition within days following a narrow consideration of cases or experiences. Although it is more than understandable to want answers, the condition is highly complex and requires further molecular level scientific investigation.

Technical issues logging in?

The best way to contact the site staff for technical support is to post in the appropriate topic or message a moderator on the staff page. However, if you cannot log in to the forum, please request support via our Contact Form.

Thank you and best wishes

– propeciahelp

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