When patient advocacy and research combine with passion and energy

I had been blogging for about a year about Breast Density before I mustered up the confidence to go on Twitter. I remember using a lovely photo of my favourite pink Echinacea plant as my profile pic and recruiting my son to get me started as I knew little about the world of Tweets an Tweeps.

I was over the moon when I had attracted about 20 followers. I began to Tweet about my advocacy Beingdense.com.

I now promote awareness of Breast Density and the relevance of Breast Screening Ultrasound and MRI for women with Dense Breasts.

I remember being away at Easter 2017, my Oncologist ‘followed’ on Twitter, I was so excited, was it recognition for my advocacy? It was a start.

I worked hard to attract followers and set a target of 400 by December 2017 and achieved it. I started the new year more determined than ever. I was beginning to enjoy the increased awareness and engagement from other advocates and patient groups.

I made contact with the Irish Breast Cancer research programme http://www.BreastPredict.com and from then on Beingdense.com began to move in a very positive direction. I discovered that researchers want to engage with patients, in fact now, they are often obliged to include patient advocates input when submitting grant applications.

There are so many patient oriented events every year and by networking with people at these, I have established good relationships within research and patient organisations.

I met Marie Ennis O Connor at one of the first Irish Cancer Society events I attended, she advised me to take down the Echinacea flower and post a photo of myself on my Blog, “let people see who they are engaging with, show them who Beingdense.com is”, I did Marie as you know and I have never looked back. One of many soundbites of advice and support from you, over the last two years or so, thank you.

Beingdense.com has a considerable following on social media and I post links to regular, up to date information about Breast Density and Breast Cancer risk research. My primary focus is to ensure that we post about evidence based information and research. I have no scientific or medical background, I do not purport to give medical advice, I am a patient advocate.

I have just co-hosted the first ever Irish Public Seminar focused specifically on Mammographic Breast Density in the http://www.rcsi.ie › RCSI_dublin – Royal College Surgeons in Ireland

I am so proud and moved by the reaction from the Seminar and the support Beingdense have received. It has been an amazing success in terms of opening up a discussion on Breast Density in Ireland and it’s a discussion I am totally invested in and will take forward, with stakeholders and patient support. To introduce our Key note speaker Dr Paula Gordon from University of British Columbia was a great privilege followed by really open, insightful presentations from Professor Fidelma Flanagan Consultant Radiologist BreastCheck and Dr Maeve Mullooly RCSI_RESEARCH I can only say the atmosphere was incredible and it felt good and right to be front and centre of it.

I was lucky enough to be accepted on to an IPPOSI patient education programme this year Irish Platform for Patient Organisations in Science and Industry
This has been a fantastic experience the commitment is considerable but like anything you do, the more you put in the more you get out. I have met lovely people and learned so much and we’re only half way through. Looking forward to the next few months of e-leaning and F2F sessions with this bunch.

I end this piece by saying thank you to Professor William Gallagher Director of Breast Predict who really listened to me when I told him about Breast Density. He engaged with my advocacy on http://www.Beingdense.com. He and his team of researchers welcomed me in to UCD Conway and encouraged my awareness and understanding of Breast Cancer risk factors. This collaboration has fueled my passion for Patient Advocacy.

Our Breast Density Seminar is the penultimate http://www.BreastPredict.com event for 2019  Beingdense.com are delighted to have been involved with it.

Beingdense came of age this year and I will continue to forge new pathways to support Irish Breast Cancer research and awareness on Breast Density and personalised risk with my Patient Voice.

Beingdense.com https://www.irishtimes.com › iris…

Irish health blog educates on link between breast density and cancer


8 thoughts on “When patient advocacy and research combine with passion and energy

  1. Congratulations and thank you so much for bringing people together who have the power to make change as well as acknowledging the importance of a woman and their doctor knowing not only their breast density, but to know what to discuss and the screening options available. Your efforts are not going unnoticed. You are saving lives of Mom’s, wives, sisters, daughters and friends… I am so proud of all that you are doing!

    Liked by 1 person

    1. Hi Michelle
      I so passionately hope that what was evident in the lecture theatre gets translated into real and positive change. Thank you for acknowledging that Beingdense efforts are not going un-noticed, it makes my effort seem really worthwhile. You know how hard it is to attract the right kind of attention on this issue you have walked that walk and talked that talk so often.
      I really felt for women in our audience who have been badly let down in relation to this issue. Women there spoke with emotional feelings anger and hurt. Women with Dense breasts who were not told about Supplemental Screening, who went on to develop late stage Breast cancer. Women who may have avoided mastectomies and harshest of treatments, had they been told.
      In the interests of women who sat in our audience last Monday, their sisters, daughters, friends and relatives, in the interest of all women, I hope we get some interaction on this soon. The evidence has been presented to us now – we wait and see.

      Thanks so much Michelle Di Tomaso 😘

      Like

    1. Thanks so much Marie. Even with your crazy busy schedule you manage to pull this together again.
      Lots of lovely reading, Sunday catch up, So happy to be included – Siobhán xx

      Like

  2. Hello! I just received your name from Nancy Cappello’s husband, Joe. I am a breast radiologist in Connecticut, USA and was very involved in Nancy’s organization and cause. I would love to work with you and be a member of your team. Please feel free to contact me.

    Liked by 1 person

    1. Julie
      I am absolutely thrilled to hear from you. Joe mentioned that he had been in contact and it would mean such an awful lot to have a Radiologist with your knowledge and expertise willing to work alongside the Irish Breast Density advocacy. I am really looking forward to seeing what can be achieved with your involvement. Thanks so much. I will be in touch again shortly.

      Like

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