Number of Patients attended: 41
The HATS LEVEL IX Awareness programme for patients conducted on 6th June 2013 was introduced by the Head Moderator- Hemophilia Day Care Centre, Dr. Naresh Gupta, Director Professor, Dept. of Medicine, MAMC & LN Hospital, New Delhi 110002. All the patients were welcomed by a warm speech and were being addressed about the significance of the awareness programme, and also to provide necessary preventive measures to tackle hemophilia in day to day activities.
Dr. Sandeep Garg, Associate Professor, Dept. of Medicine, MAMC interacted with the patients through the medium of interactive presentation to deliver a clear understanding of the disease, its symptoms, complications and the treatment. A descriptive presentation was found to be helpful, since lack of knowledge and awareness amongst the patients to understand the disease well and tackle it in day-to-day living.
After a brief discussion on hemophilia, Dr. Sartaj Ali, Medical officer, HDCC, LN Hospital, educated the patients on how to take care of bleed in hemophiliacs. First line therapy of PRICE was recommended to all the patients in case of bleeds, along with reporting to the nearest hemophilia centre along with Factor infusions.
Open House Comments and Queries
Patient Queries and Doctor’s message:
Q.1. What is hemophilia?
RE: Genetic disorder in which there is in-sufficient amount of Factor VIII/IX clotting elements.
Q.2. How is it inherited?
RE: It is inherited from carrier mother.
Q.3. How to diagnose whether the embryo of a pregnant woman is hemophiliac or not:
RE: Pre-natal diagnosis and amniocentesis.
Q.4. Is all hemophilia same?
RE: No. There are two types of hemophilia, A & B, which also further have different grades of severity i.e. mild, moderate and severe.
Q.5. What are the symptoms of an internal bleed?
RE: Pain, Redness and swelling around the bleed area, with feeling of warmth and loss of mobility.
Q.6. How to access intra-cranial bleeds?
RE: Headache, vomiting, loss of consciousness, dizziness and blurring of vision.
Q.7. How to test for factor VIII deficiency?
RE: Factor assay test.
Q.8. With time, what happens to the factor levels in the body? Does it remain constant or changes?
RE: Its remains constant throughout the life.
Q.9. After injury, applying ice to the bleed area is advised. How should be that done?
RE: Apply ice using an ice-bag or indirectly through a cloth to the inflammed area, with a discontinuous motion.
Q.10. Sometimes, exercises also accelerate bleeding?
RE: Firstly all exercises should be done under the specific regimen of the physiotherapist, and secondly no exercise or work should be carried out until 2 week post-bleeding event.
Q.11. What is the time required for a joint bleed to subside?
RE: Depends upon the severity of the bleed and muscular conditions, which atleast requires 2 weeks.
Q.12. Is there any special provision for patients with hemophilia?
RE: No. There is no special provision, however free treatment for hemophilia is available at many centres.
Q.13. How to diagnose the condition of a joint severed by repeated bleeding?
RE: MRI analysis.
Conclusion:
A lot more needs to be done for the patients to educate them about hemophilia through these kind of awareness programmes. After the meeting and discussion, the patients were quite satisfied and filled with a new ray of hope, to live me with hemophilia more happily. Conducting such programmes on a continuous basis shall enable us to reach patients situated more remotely who are presently unaware of such cure.
Leave a Reply