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SESSION 1 – PID’s and Gastro-intestinal Issues
We listened to a patient story but it was so dragged out that most of the people all around us start leaving the room. We must be short on patient stories – I think that delegates want to hear the problem and the resolution, not too much about the road to the solution.
SESSION 2 – Autoimmunity in PID’s
Scientific and molecular basis of autoimmunity in PID’s
The Clinical management of autoimmune cytopenia’s
Managing lung complications in CVID – an autoimmune issue
SESSION 3 – Focus on SCID
This was one of the most interesting sessions I attended.
The spectrum of Severe Combined Immunodeficiency defects – Prof. Bobby Gaspar
SCID Treatment advances – Bone marrow transplant and Gene Therapy
- Newborn screening and the implementation thereof
- Gene therapy
- PID’s treated by allogeneic hematopoietic stem cell transplantation
SCID Newborn screening – an update by Prof Jennifer Puck
SCID Newborn screening in Brazil – Prof Antonio Condino-Neto
INGID – NURSES SYMPOSIUM
The important role of the nurse in Immunology
Nurse Sarita Workman is a specialist Sister in Immunology Research at the Royal Free London Nasional Health Services Foundation Trust. She talked about her role of nursing in Immunology, her research while working and training others. Sarita has been working in the field of Immunology for over 11 years. Her position is the set up and co-ordination of clinical trials and research studies occurring within the department, as well as including the administration of Immunoglobulins to patients, home therapy training and assessments. She also co-ordinates specialist clinics such as the adult post bone marrow transplant (BMT) clinic and the transition clinic between child and adult services from Great Ormond street Hospital to the Royal Free Hospital ensuring that the patients transfer from service to service goes as smoothly as possible.
A remarkable women, she is a natural speaker and I could hear that she did her training with ease.
Training patients for home therapy
Nurse Carla Duff gave a talk on administer home therapy and I could hear that South Africa are way behind most of these countries if it comes to home therapy.
Setting up new services for PID patients, sharing knowledge and skills
Nurse Karin Ludwig started off talking about medical care as a whole in South Africa. The problems that keep us from proper diagnoses and research. The state of the state hospitals and clinics and the negative attitude of some of the nurses working in the unhealthy environment. She mentioned that nurses training for subcutaneous infusion has started and that she is going to train more nurses all around South Africa to train their nurses in the specific province.
Nurse Karin Ludwig, together with her 2 children are SCID patients, she is a hands-on subcutaneous infusion nurses trainer. Nurse Karin also accomplished home therapy training in sub-cut to be paid out by a medical aid for the first to a private nurse in SA.
IPIC 2015 Cruise Dinner
Congress
SESSION 4 – Management of infectious complications and immune dysregulation in PID’s
Biological agents in Primary Immunodeficiency
Managing infectious complications in the developing world
Immunisation and infections in PID’s
SESSION 5 – Oral presentations / Poster winners
I attended this session with Nurse Carla Duff, member of INGID and nurse in Atlanta USA. She presented a poster on her husband who passed away 18 months ago. Unfortunately someone else won this award.
SESSION 6 – The promises and pitfalls of new genetics
New technologies identifying new gene defects in PID’s
Ethical perspective on genetics and PID’s
SESSION 7 – Registries: How to use them to advance clinical care
Registries: From research to clinical practice
ESID registry patient experience
Jose Drabwell, Chairperson for IPOPI in UK talked about her own experience that started in the late 90’s after a delayed diagnoses of CVID.
Registries are essential to society and are a major tool for public health policies. Data is also essential for research, also for national and international collaborative research.
Patient representation:
Must be involved at regular meetings
Members must take part in decision making process
Financial and strategic decisions
Experience from United States – Prof Jennifer Puck talked about the newest project called “Following infants with low lymphocytes” FILL
Experience from Africa – Dr Monica Esser discussed the issues in AFRICA – the vast environment and still a lot to do and establish. This is our challenge to train and equip doctors to early diagnoses of PID. Once we can establish a better registry in SA, we can help the other countries on the continent of AFRICA to progress in the field with establishing registries.
CONCLUSION
This was a scientific congress and whoever attended these sessions went home with a library full of knowledge to implement in their specific Countries to make a difference in PID.
I am working and dealing with a Primary Immunodeficiency child (Anle has Ataxia Telangiectasia) on a daily basis and this was a very noteworthy congress. I also made some new friends and was privileged to meet other attendees and also some of the presenters whose sessions I attended.
My sincere thanks to PINSA and IPOPI who sponsored this wonderful experience. Also special thanks to INGID for allowing me to share accommodation with one of their members.
ABBREVIATIONS
| IPIC | International Patients Immunodeficiency Congress |
| PID | Primary Immunodeficiency |
| IPOPI | International Patient Organization for Primary Immunodeficiency |
| SCID | Severe Combined Immunodeficiency |
| CVID | Common Variable Immunodeficiency |
| INGID | International Nurses Group for Immunodeficiency |
| BMT | Bone Murrow Transplant |
| PPTA | Plasma Protein Therapeutics Association |
| PLUS | Platform for Plasma Product Users |
| ASID | Africa Society for Immunodeficiency |
| LASID | Latin American Society for Immunodeficiency |
| NHS | National Health Services |
| SLT | Speech and Language Therapy |
| ESID | European Society for Immunodeficiency |
| ICH | Institute of Child Health |
| PICU | Paediatric Intensive care Unit |
| XLA | X-Linked agammaglobulinemia |
| TRECs | T-cell Receptor Excision Circles |
| KRECs | Kappa-deleting Recombination Excision Circles |
| GA | Gestational Age |
| BW | Birth Weight |
| DBS | Dried Blood Spots |
| WASP | Wiskott-Aldrich Syndrome |
| WIP | WASP Interacting Protein |
| LAD | Leukocyte Adhesion Deficiency |
| PIDD | Primary Immunodeficiency Diseases |
| CGD | Chronic Granulomatous Disease |
| SCIG | Subcutaneous Immunoglobulins |
| IVIG | Intravenous Immunoglobulin |
| HIV | Human Immunodeficiency Virus |
| BTK | Bruton Tyrosine Kinase |
| COPD | Chronic Obstructive Pulmonary Disease |
| CCI | Centre for Chronic Immunodeficiencies |
| UKM | University Kebangsaan Malaysia |
| SEAPID | South East Asia Primary Immunodeficiency |
| NIH | National Institute of Health |
| CRRDC | Centre for Research in Rare Diseases in Children |