At the end of July, I was invited to attend the 2019 Global ITP Alliance meeting which was held in Washington DC. As the representative of ITP Australia, and one of the newest members of the Global Alliance, I was welcomed and learnt a lot from the other organisations that span the globe.
The 2019 meeting was attended by a number of representatives from various countries including Argentine, Brazil, China, Denmark, Finland, Italy, Netherlands, New Zealand, United Kingdom and the United State of America. There are more than 30 countries now included in the Alliance all working together to build awareness of ITP in their respective countries, providing patient support and advocacy.
The meeting was a great platform to share what each organisation is doing in each country, with some of the organisations running for more than 20 years. We discussed topics around sharing information, funding both in each country and potentially at an international level, patient advocacy, emerging treatments, patient quality of life and much more.
We presented as a group to a number of industry stakeholders and discussed the challenges we faced both locally and internationally regarding funding, treatments and resources, as all organisations are run and managed by volunteers, with the vast majority being touched by ITP in some form.
After a full day of meetings and discussions, we came together as a group and met with a number of the Medical Advisory Board for the PDSA.org and had a chance to share our individual ITP stories and get to know each other a little better.
Global ITP Alliance – 2019 PDSA Conference
After the formal Global Alliance meeting had been held, we were invited to attend the 2019 ITP Conference. The 2019 Conference was the largest to date and was a wealth of information.
We also managed to let our hair down a little as we enjoyed the time we had together.
In the coming months, ITP Australia, with the assistance of and in conjunction with the Global ITP Alliance, will be bringing forward a number of new initiatives and building on the work already completed.
If you’re interested in finding out more about the Global ITP Alliance, head to the website here.
If you’d like to find out more about the 2019 PDSA Conference, head to their website.
On Saturday 6th July, we were joined by over 40 people at the first ITP Australia organised ITP Patient Meeting in Melbourne. We’d like to thank the generosity of our presenters who donated their time and Novartis for their support.
After a successful Regional PDSA Meeting held in Melbourne last year, ITP Australia was joined by a number of top Australian and international ITP specialists, thanks to the event being held at the same time as the 2019 ISTH 2019 Congress.
Patients and caregivers learned about ITP and received information across a variety of different topics. Attendees reconnected with other patients that they knew through Facebook support groups and met made new patients. All the presenters talked directly with attendees, one on one, listening to their individual cases and answering questions and providing support.
The topics included:
- Welcome and Introduction – presented by Danielle Boyle
- History of ITP and what ITP is – by Dr Robert Bird
- The latest ITP developments – by Dr David Kuter
- ITP and Pregnancy – by Dr Terry Gernsheimer
- Paediatric (Childhood) ITP – by Dr Chris Barnes
- ITP Updates and Clinical Trials – by Dr Phil Choi
- About the Spleen – by Penelope Jones
The team from The Video Box joined us and film the event. You can purchase the videos online plus get a copy of each of the presentations.
Thank you to everyone that was able to join us on the day. We truly enjoyed having you all together. The feedback from the event was informative and will help us to continue delivering this information and holding more of these events across the country in the future.
Missed out on the event? Buy a copy of the Videos here.
Photos from the event:
As part of our commitment to provide relevant information, we held our first ITP Australia Patient Meeting in Melbourne. We were joined by ITP specialists from both Australia and the United States as they delivered informative presentations across a number of areas.
We learned about the history around ITP, what the disease does, the medical advances through research and developments with treatments, heard about ITP in pregnancy, discussed paediatric diagnosis and treatments plus learned about clinical trials past and upcoming.
While we understood that it wasn’t going to be possible for patients and their families to travel and attend our meeting, we also knew the calibre of speakers wouldn’t be available in one room for patients in Australia for some time. We wanted to make sure that this information was available for as many people as possible as therefore we’re able to record the sessions to make them available for all carers and patients regardless of their location.
Preview the content below and for more details on how you can get the recordings from the ITP Patient Meeting – head to the ITP Patient Recordings page.
Meet Hudson. He’s a typical toddler that has had ITP for nearly his entire life. Learn a little about his journey through the eyes of his parents Brianna and Trent.
In the Beginning
Hudson was born in December 2016, healthy, happy and absolutely thriving! He was such a calm and easy baby despite his first winter being a little tough. Hudson had one case of gastro and common colds that would come and go for around 6-8 weeks. During that time, I took him to our GP 3 or 4 times to get his chest, ears and throat checked because I was worried it was an infection as it was going on so long, we were reassured that everything was fine each time and come August he seemed better and the illness was put behind us.
Around 4 weeks later as I was changing Hudson I noticed some purple little-prickled dots on his ears. I thought it was strange but thought that maybe it was a reaction to some of the new food he was tasting; because there was nothing around his mouth I didn’t believe he needed to see anyone, maybe it would just go away?
2-3 days after I noticed the dots on his ears (petechiae) I noticed some black bruises on Hudson’s legs during a nappy change. I was shocked at first, I couldn’t understand how a child who could not yet crawl or walk have bruises on his legs! I began to take his clothes off and check anywhere else for bruises, I started to fear he had meningococcal. Much to my surprise there they were, more and more purple dots covering his tiny torso, arms, wrists and fingers!
I started to panic, and I rang our local GP straight away; they said we could go down without an appointment but may have to wait a little while.
When we saw the Doctor, he did all the regular checks, checked ears, throat, chest, looked at the dots and bruises on Hudson. He told me at that stage Hudson would need some blood work done. I felt pretty casual about it and he started printing out the pathology forms.
At that moment I laid Hudson in my arms for a bottle, again another shock before my eyes; his nostrils covered in fresh blood. I told the doctor and he started dialling on his phone; I didn’t know at the time, but he was ringing the hospital paediatrician.
They told him that we immediately needed to come to the hospital and it was probably ITP. I look back now, and I felt so calm, surely it wasn’t that bad, was it?
I went home and packed our bags and we made our way into Barwon Health Geelong. Little did I know that those 4 walls would soon become our second home.
When we got to the hospital we were rushed through emergency and our baby went through his first blood draw. We waited patiently for results and Hudson continued to be his happy self.
A few doctors came in around an hour or so later and told us that Hudson’s platelet count was 2. Extremely low and extremely dangerous. We were admitted overnight and saw the paediatricians in the morning who decided that Hudson needed to start high dose steroid treatment.
They explained the basics of ITP to Trent and me and told us that most children who have this after a viral infection soon get better without treatment, they told us that Hudson should be better within 6-8 weeks. I remember thinking, 6-8 weeks, he’s going to be sick for that long, I look back now and feel as though I had been lied to in a way, because now 14 months later he’s still battling every day.
Steroid Treatment
The steroids changed our little boy, he went from happy and laughing to being moody and irritable constantly, he forever wanted to eat and drink and my perfect sleeper was now not enjoying rest time at all.
Over 3-4 weeks Hudson’s platelets went from 2 up to 56, they were happy with that number for that stage and decided to wean the dosage down because of how irritable he had become. We reduced the dose over the next 3 weeks and his platelets eventually dropped back down to 9.
Our paediatrician decided that we would up the dosage to the high full amount again for another week or 2 and see if that would make a difference. By week 8 and 9 the steroids were failing, in two weeks the platelets went from 9 to 10. Between all of this craziness of steroid treatment we had a paediatric appointment once a week, two blood tests weekly and 2 hospital registrar appointments on the ward per week.
The discussions between the doctors amongst all of this were to start another treatment, the long-term effects of steroids on someone so young wasn’t good for Hudson’s fresh little organs or behavioural characteristics.
Starting IVIG
They made the decision to start using IVIG on the 24th October 2017; I remember them explaining the risks of IVIG to Trent and I and presenting me with the consent form to show that I knew the risks; I consented because I felt like what other choice did I have; the first line treatment had failed and I needed him to get better, he had to get better; so I signed and they started as soon as they could. Our paediatrician had decided to do two consecutive ones as that would give Hudson the boost he needs to hopefully get him back to his normal level. He responded well to both and 5 days later his count was 303. I cried with joy, I couldn’t believe it, I honestly thought our ITP ride was over.
The celebration for Hudson was short lived and within the next 21 days, Hudson received 3 more IVIG treatments. Our wonderful doctors at Barwon Health were baffled and that was when they then pulled us aside and explained he should have been lasting 4-6 weeks with the double dose; they explained that they still thought Hudson had ITP but they also needed to check that he didn’t have leukemia.
The Next Chapter
They explained ITP presented the same as childhood leukemia and Hudson was classified as “too young” for ITP like this as he was only 8 months old when diagnosed. Hudson’s battle was now too big for them at Geelong and it was then we were referred to our amazing haematologist Chris Barnes at Royal Children’s Hospital in Melbourne. We saw Chris two weeks later, he ordered more bloods and organised a bone marrow aspirate for Hudson the day after his 1st birthday.
20th December 2017, we arrived at RCH and Hudson underwent the procedure, he coped really well and wasn’t in much pain afterwards at all. Much to our surprise, his count during the surgery was 163 just 2 weeks after IVIG, that usually never happens; but most of all his marrow results were clear of cancer and characteristic of those who have ITP.
After that Hudson’s body starting grabbing onto the treatment more. As of January 2018, he started having just two IVIG sessions per month, and monthly blood tests. It was a welcomed relief to not have to put him through so much pain and discomfort as often as usual.
April 2018 gave us more results with Hudson going 4-6 weeks between treatments and only needing one IVIG.
For treatment days we see our beautiful nurses on Day Medical at RCH, they have been so helpful and make Hudson a little more comfortable when receiving his treatments. They also helped us find support from Challenge who support families living with cancer and blood disorders.
During treatments Hudson has a play therapist who finds activities for him to do to pass the time and also comes in with us to get his cannula in; this provides great distractions, sometimes.
At this stage, our biggest battle for Hudson is getting his cannula in for treatment. His little veins are full of scar tissue which means the drip goes in, but it’s hard to get the right spot for the flow of it. Hudson becomes increasingly distressed because of the number of times they try so we are in the midst of coming up with some different plans to help.
Lately, they have been using light sedation to make him calmer and so he won’t fight us as much.
Nothing has hurt us more than seeing Hudson go through the pain of ITP, especially getting a drip in, to see your child bruise from crying so hard really puts what you’re dealing with into perspective and how dangerous it can be.
The after effects are also horrid, Hudson refuses to look at the skin on his arms and gets distressed when he wears a short sleeve shirt, pointing to his arms where the needles go and saying “ouch, ouch”.
The Symptoms
Hudson has had horrible symptoms for a while because of ITP; he would be off balance and dizzy which would cause falls; he would vomit from nausea that came when his platelets were low and then he would also get bruising from the pressure that came with throwing up. We struggled not to panic when he was learning to crawl and walk; it was a fearful time.
Hudson’s symptoms now differ when his counts are high or low. He gets petechiae spots around 40 and lower, Nasal passage bleeding when under 10. Bruises anywhere from 80 and under and mouth blisters when he’s 30 and under. It gives us comfort to know that our Haematologist will treat us accordingly. He explained that they will always give him treatment when he clearly needs it, and not to panic or worry that it won’t be available because for Hudson it will always be there when he needs it.
Hudson is now classed as a chronic patient. He may go into remission, he may not. We have learned to live with it and take each battle as it comes now. Hudson sees Dr Barnes every 8 weeks, bloods are done monthly and treatment every 4-6 weeks or when needed.
Hudson is so strong, so supported and so brave, we are very proud of how he’s been fighting this battle at such a young age!
Awareness is the key to a cure, and hopefully, one day that will be found!
Kind Regards, Brianna Welding, Trent Campbell & Hudson Campbell
Hudson Update
As updated on the ITP for Aussies page, we’re happy to report that as at 29th December, Hudson’s platelet count was 63 and therefore his treatment previously booked for New Year’s Eve had been cancelled.
The ITP Support Association held their 21st Annual Conference in the beautiful city of Chester, at the historic racecourse in the North West of England in October 2018. Here’s what they got up to.
This year’s UK Patient Convention was held in Chester and was combined with the ITP International Alliance meeting. It was a truly global event with speakers and patient organisations from the UK, USA, Brazil, India, Denmark, Italy, Netherlands, Norway and Sweden.
Here are just a few of the many highlights from this fantastic day.
Social Media was on the agenda, with a look at how many people we are now reaching on social platforms such as Twitter, Facebook and Instagram. The ITP Support Association Facebook page has over 5,000 followers from across the globe and has become a place for discussions and story sharing. Users add their fundraisers to the page, ask each other questions and most importantly, provide each other with support. It’s incredibly important for patients to have a place where they can voice their thoughts and concerns at any time of day or night. Just chatting with a fellow ITP patient can have a hugely positive effect.
The presentation on platelet counting provided insight into how far medicine and science have come. With the arrival of the Coulter machine in the 1970s, laboratories were able to process a vast amount of samples and provide results much quicker – but even now, lab technicians are still working 5 days a week and long into the night to cope with the sheer volume of results needed for patients. The more modern Beckman Coulter machine will be the way forward – but with a hefty price tag, not all labs can obtain one.
Haroon Miah presented on the UK Adult ITP Registry, which collects data from patients throughout the country. The aim of the registry is to amass enough data to help doctors better understand ITP, find possible clues to causes, and search for possible genetic links. There is also a sub-study being conducted right now investigating ITP in pregnancy.
Paula Bolton-Maggs spoke about the ITP Forum that was established in 2011. The Forum works hard finding ways to improve patient care and further educate healthcare professionals and the public about ITP. The Forum meets twice a year and has proved incredibly successful in bringing specialists together to share and learn from each other. There is now a much better understanding of ITP for both the medical world and the public thanks to the ITP Forum.
Other subjects covered during the convention included Cindy Neunert’s talk about Pediatric ITP, with 5 in 100,000 children developing the disease.
An exciting development that was highlighted this year is the ITP Pocket Log App (UK Only)– on this app patients can log their symptoms, test results, medication, add notes and appointments and read more about ITP in the fact section. There will be a new version of the app available from next year and ITP Australia has reached out to the developer to see if this app will be available in Australia in the future.
If you wish to see the presentation slides from all of the incredible speakers, they can be found right here
Here in Australia, we recommend the ITP for Aussies Facebook Group. It’s a closed group so all discussions are private and amongst patients and family members. You can find it in our helpful links section of the ITP Australia website – www.ITPAustralia.org.au
ITP Australia is hoping to hold its first ever Australian ITP Conference in 2019 – so keep your eyes peeled for further announcements. If there are any particular areas or topics that you’d like to see included in the first conference, please get in contact with us at info@ITPAustralia.org.au.
While the PDSA held their first Regional Meeting in Australia in March 2018, they hold a conference annually in the USA bringing together carers and patients and providing new information on ITP through their growing network of medical advisors.
The Platelet Disorder Support Association hosted its annual conference in July in Cleveland Ohio, providing much-needed support, information and assistance from some of the world’s leading ITP experts.
This year’s packed program included a welcome hike, small group discussions, teen and women-focused sessions, educational dinners, and panels of exceptional medical advisors presenting on a wide range of ITP topics.
There was a deep-rooted feeling of community, support and care throughout the weekend. An important part of the conference involved patients sharing their stories – to not only voice their own personal struggles but to also relate and learn from others facing similar difficulties.
Last year’s conference highlighted the need to discuss the emotional side of living with ITP, including depression and anxiety. Stress management specialist Dr Francoise Adan presented this year; discussing tools that can help patients cope better, thereby helping to alleviate the negative mental impact.
Unmanaged stress can have such a huge impact on the physical effects of ITP – and she asked the attendees to pinpoint how stress affected them. She spoke of the importance of recognising when stress takes control and what actions to take in these moments – perhaps watching a favourite movie, taking a walk, meeting a friend for coffee or enjoying a relaxing bubble bath.
Devoting time and energy to improving one’s mental health is absolutely critical in coping with ITP, so it was wonderful hearing Dr Adan speak on this extremely important topic.
Other speakers focused on the latest drug breakthroughs, assistance for caregivers, emotional support and how parents can help their children to live with this chronic disease.
The Saturday night party provided a fantastic chance for patients, friends and families to laugh, dance and bring a little fun into their lives.
Attendee feedback included an appreciation for the increased understanding of treatment options, as well as a wonderful feeling of camaraderie throughout the weekend. To be surrounded by people who understood and cared was hugely beneficial, whilst many felt that just being there was a great source of comfort and provided huge emotional support.
- You can get your own copy of the videos from the PDSA Conference from here
- The PDSA 19th Annual Conference has been announced! Save the date for 26-28th July 2019 in Washington DC. Head here for more details
ITP Australia is hoping to hold its first Australian ITP Conference in 2019 – so keep your eyes peeled for further announcements. If there are any particular areas or topics that you’d like to see included in the first conference, please get in contact with us at info@ITPAustralia.org.au.
As always we would love to hear from you with any comments – especially if you would like to share your personal story or any ITP-related experiences that you feel may help others. Together, we are stronger.
Source: RareDr.com
The interim results for the I-WISh survey undertaken by Novartis, which collaborated with 480 health care providers across 13 countries, found that a high percentage of patients with Immune Thrombocytopenia experienced negative impacts to their quality of life due to the immune disease.
At the end of March 2018, more than 30 people travelled from across the country to attend the first PDSA Regional Meeting in Melbourne, Victoria.