Living with MPDs Day Nov 2011 – A patient’s experience of the day

Alisia O'Sullivan, an ET patient shares her experience of the Living with MPDs Day

“Informative, jam-packed and a great chance to network with MPD patients and experts.”

The first ever MPD Voice patient day “Living with MPDs” recently took place on 19^th November 2011. Along with over 250 delegates, comprising patients, family and friends, who had travelled from far and wide in the United Kingdom and Europe, I consider myself privileged to have been able to attend, listen to and benefit from such a concentrated wealth of knowledge from the leading experts in the field of MPDs.

The day was expertly chaired and opened with a warm welcome from Jon Mathias, one of the founding members of the charity.

It was a day packed with a range of talks covering the individual MPD conditions, treatments and the latest medical options as well as fascinating updates on the latest research initiatives, managing stress, why MPDs cause blood clots and an overview of current and future drug trials.

The morning was comprised of clear and informative presentations from leading UK MPD specialists, Prof Tony Green, Addenbrookes, Cambridge, Dr Steven Knapper, University Hospital of Wales, Cardiff, Dr Nauman Butt, Arrowe Park Hospital, Wirral and Dr Nicky Thomas, Guy’s and St Thomas’ NHS Trust, London. International medical expert presenters included Prof Jean Jacques Kiladjian, St Louis Hospital, Paris and Prof Ruben Mesa, Mayo Clinic, Arizona USA.

In the afternoon the pace of information updates continued with more expert presentations from Dr Claire Harrison, Guy’s & St Thomas’ NHS Trust, London, Prof Mary-Francis McMullin, Queen’s University, Belfast and Prof Tiziano Barbui from Bergamo, Italy.

Copies of the presentations have very kindly been made available to MPD Voice by all the Professors and Doctors, we are very grateful to be able to have access to them, they have also made available their presentations from the previous day - ‘Myeloproliferative Neoplasms Advances Day …. a meeting for Healthcare Professionals’ where leading experts in the field of MPDs met to discuss and present the current trial findings and advances in the diagnosis and management of MPDs. You can view the patients’ day presentations here, and the healthcare professionals’ day presentations here.

How encouraging for patients with MPDs to witness and know that such an auspicious group of experts are working together to find better ways to understand and manage our conditions and ultimately find a cure for these rare disorders.

As a patient I was encouraged and challenged by the array of information and found all the presentations useful and relevant, even if they really challenged my ‘lay persons’ medical knowledge and experience!

One patient used the phrase that you have to be your own project manager with a rare and complicated condition such as an MPD and this day provided the right sort of information to absorb and filter a vast array of facts. There was something for everyone; not an easy feat, given that some patients were newly diagnosed whilst others had been living with the condition for years.

Amazingly, as well as the presentations on the aspects of the disease, the organisers squeezed in a very moving and encouraging session, where 3 patients and one mother of an MPD teenager, (diagnosed at 8 years old) shared their personal varied experiences. Their stories were honest and challenging, demonstrating that living with MPDs is not always easy. Hearing their testimonies and talking with other patients later in the day there was a recurrent theme of needing the emotional support of other people who can understand what you are going through, and whilst many were receiving good clinical care, it was obvious that many patients benefited from the support of MPD Voice and networking with other patients via MPD Chat.

Lunch time provided a chance for patients to network and exchange contact details and there was free access to the expert Doctors who welcomed the many questions posed by the attending patients who in turn appreciated an opportunity to discuss more than their latest blood counts and medication levels.

The afternoon presented a chance to breakout into sub-groups for the main disease areas of ET, PV and MF. In these sessions patients had the opportunity to share experiences and ask even more detailed questions of the medical experts. The session I attended on ET was lively and the three Drs and MPD Voice patient representative managed to answer all the wide-ranging questions posed by the delegates to the satisfaction of the information hungry attendants. As an ET patient I was pleased to pick up new ideas, encouraged to exercise more and reassured on some of the areas where I had patchy or limited information, e.g. the latest UK medical protocol on aspirin.

I really felt that one of the great opportunities witnessed through the day were patients being able to network and support/empathise with other people with similar medical challenges, MPD patients can sometimes feel isolated and meeting with other patients and having access to leading experts was obviously a much appreciated opportunity for the delegates.

Feedback to the organisers has been encouraging and varied – here is just a small selection of the comments received by MPD Voice:

“What a wonderful day, it was so good to hear the speakers and for the first time since diagnosis to meet and speak with fellow MF sufferers.

Ruben Mesa was in a class of his own, he spoke so well and was so patient, kind and generous with his time.” Celia

“Hello! I must thank you for a fantastic experience. All of the program was fantastic, and I learned a lot. Even though it was rather expensive to travel from Norway, it was worth it!” Inger

“Thank you for the excellent organization of the MPD Voice conference in London. For me, my husband and daughter it was such a worthwhile experience. To have so many world respected Clinicians speaking to us and being so approachable was such a good experience. We all now feel reassured about treatments, drug trials and knowledge about this baffling condition.” Iona

“Great day, really well organized, informative, interesting and incredibly intelligent speakers! My brain hasn’t recovered yet, so can’t think of any other long words to describe the day but thank you.” Rachel

“I attended the forum yesterday with my husband who has PV, which was a completely new experience for both of us and so we didn’t know what to expect.

We both found it very informative – some of the stories were very uplifting, which was reassuring, although some stuff was quite scary. When my husband was diagnosed with PV in July of this year we were just given a small booklet from the hospital and told to go away and read it, telling us at the same time that although the booklet had been put together by the Leukemia & Lymphona Charity, “Don’t worry it’s not cancer…..!” you feel very confused, scared and alone for a time and that’s when I decided to do some research on the internet and came across the MPD website.

It is so reassuring to know that we have a support group like MPD, who are there for people suffering from these chronic illnesses and who understand what they are going through.

On behalf of my husband and myself I would like to say a very big thank you to you, the doctors and everyone involved. It was great to speak with other people who completely understand what you are going through and to feel that you are not alone after all!” Deborah

Even the expert Doctors felt that this was a very special day for all concerned:

“My sincere thanks for allowing me to participate at your meeting. It was a great experience especially with patients.” Prof Tiziano Barbui from Bergamo, Italy.

Since becoming aware of MPD Voice 3 years ago, I now know that a small group of dedicated volunteers work hard to provide information and support to hundreds and maybe thousands of patients. It was conceived as a support group to offset the lack of information about this life changing and challenging group of rare blood disorders and as Tamara, another founding member recalls, ‘to support patients who only ever encountered “Dr Doom” patient care’. In its short time since formation it’s been an amazing resource for those who have discovered its existence. For me the clear and up-to-date information was invaluable in the early days of understanding the condition and I hope that it will go from strength to strength and remain proactive and forward thinking in its support of patients and delivery of information and research support.

And a final comment from one of the charity’s founders:

“Saturday’s event represents a huge milestone for us – it shows us how much we can achieve as a team……… judging from the feedback that people were giving as they left, it delivered exactly what MPD Support (now Voice) was originally created for. I feel enormously proud of being part of such a great team.” Jon Mathias

Saturday's event represents a huge milestone for MPD Voice