Thalassemia-Pune

Prevention-ZERO Thalassemia

We at the Thalassemia Society are committed for Prevention and Awareness drives in and around Pune. We have set a goal to achieve ZERO Thalassemia birth of new Patients in Pune by the year 2020.

As a part of this, we are planning to cover all corporates and colleges. We have conducted major awareness campaign in Infosys, Wipro, Fiat, VW, to name a few- where we have collected more than 500 samples for screening and are in process of counselling affected people with Thalassemia Trait. We are in process of similar mass awareness campaign / screening for prevention in various communities to create awareness of the disease condition .

Mission Statement

The Thalassemia Society Pune Chapter was founded by patients, parents and friends affected by Thalassemia. The foundation provides hope, comfort and encouragement to those battling this disorder. At the heart of the organization is a strong desire to help improve the quality of life for all patients with Thalassemia. We volunteer our time to organize conferences, raise funds to educate the community, ensure patients and parents know the latest in care.The foundation maintains a strong relationship with the medical community that provides diagnosis, treatment and care.

Join Us

Make A Donation

Surendra @ +91-976-651-1371

Email Us

Important Contacts

Office Phone - +91-844-671-6162 (Open from 10am-2pm)

Blood Filters - Mrs. Naina Doshi +91-927-004-9248

On the occasion of International Thalassemia Day, TSPC presents DOCS Orchestra for a charity fund raising program for the cause of Thalassemia as well as it's awareness. Date: 5th May, 2018. Timing: 7pm to 10pm. Venue: Symbiosis Old campus Auditorium, Vimannagar, Pune. For more details/query - 📞 TSPC: 8446716162

Thalassaemia group meeting on Saturday, 31st March 2018 at DMH, Pune

Thalassemia Screening

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Thalassemia - you can help.prevent....

The Thalassemia Society Pune Chapter (TSPC) was founded by patients, parents and friends affected by Thalassemia Major . The foundation provides hope, comfort and encouragement to those battling this disorder. The foundation maintains a strong relationship with the medical community that provides diagnosis, treatment and care.

We at the Thalassemia Society are committed for Prevention and Awareness drives in and around Pune. We have set a goal to achieve ZERO Thalassemia birth of new Patients in Pune by the year 2020.

As a part of this, we are planning to cover all corporates and colleges. We have conducted major awareness campaign in Infosys, Wipro, Fiat, VW, to name a few- where we have collected more than 500 samples for screening and are in process of counselling affected people with Thalassemia Trait. We are in process of similar mass awareness campaign / screening for prevention in various communities to create awareness of the disease condition .

We are also collaborating with like-minded organisations for awareness. We collaborated with Ishanya Foundation to spread awareness among all Assamese individuals staying in Pune since there is a high prevalence of a type of Thalassemia in the east.

We help needy patients to ensure they are following effective treatment protocol to lead a perfect life. We have a lot of poor patients who can't afford treatment and it is our endeavour to ensure help to them to battle the disease.

We are also arranging forums for get together of patients and Parents for treatment updates and cascading screening for future prevention in their Families.

We require funds to manage all the activities we are doing and request your kind help to inspire us to do more and more in the Field of Thalassemia through our Thalassemia Society Pune Chapter (TSPC).

We have the 80G exemption certificate too for donations to our society .

It is our earnest plea to request financial help in our noble cause and become our partners in PREVENTING Thalassemia in Pune.

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Details of Thalassemia conference at Mumbai held on 9-Sep-2017 and Taj hotel.

Dr Agarwal started the meeting with agenda details. Handed to dr swati karaia to introduce speakers. Dr Karakia introduced speakers of the event. Dr Bhavin Jhankaria - consutant radiologist explained the importance of mri MRI is sort of magnet. Iron is in tissues so magnetic effect between MRI and iron in tissue is read. T2* reading provides amount of Iron in tissue He mentioned that image quality in 3T scanning is far better T1 mapping- is done for Lever, heart, pancreas. He cautioned about testing centers and asked to check if testing center has experience in doing the scan. Also one can't compare testing results from one center to other. Not every MRI machine and doctor can do the testing T2* test should be done 15 years onwards every year. Before that based on dr recommendations it should be done. Squid is for lever, ferriscan is for lever. T2* heart for heart. Squid is obsolete now post MRI. MRI itself tells about fibrosis. Fat scan is mainly used yfor cancer detection, not related to thalassemia. Even though serum ferritin is maintained low, still scans are required since heart deposit can be anything. Imperial software is used by cmc vellore and Jankaria labs only. Experience and expertise makes difference. Each report from Jankaria is reviewed by home and additional doctor.
Dr Agarwal spoke about different chelators and oleptiss: He conducted quick survey about different patient and different chelation being used. Some key notes: Desparal cant be taken by mouth and is inconvenient due to method of administering. Kelphar- 20-25% joint pain, few stopped because of nil heart overload. It can damage bone marrow. Need to take 3 times a day. Desferal /Asunra/Desifirox- gastritis , some issues related to stomach. Oleptiss- no restriction on food intake. Try to take it at same time. Can be mixed with food. Compliance goes up due to ease of administration. Convenient, effective. Less stomach problem.
Dr Agarwal also talked about Eltrobopag: it may be useful for chelation.70% iron in level and most of the rest iron is found in spleen. Presence of iron in Heart posseses danger, Iron in pancreas impacts height/s growth. Higher dose of any chelators are toxic ELT is oral pill. Iron mobilization is better than existing drugs, It's still just theory yet.
Message from Pankaj Gazals was played. Dr Agarwal felicitated PATUT dignitaries. Mr Shah, Mrs Majethiya. Blood cancer survivor Srushti shared her experience. She wrote a book and it is published. Mrs Tuli was felicitated. She addressed audience and given her well wishes.
Tea break Dr Shruti Kakkar (Ahuja) spoke about bone health: Thal patience quite a few facing issues with bone, backache, fractures. Weak bones, realistic problem in thal. Osteoporosis- pours bone- weak bones. Dexa scan detects bone density. -2.5 or less is osteoporosis. Risk increases with age. Weak spinal column Can lead to paralysis. After 10 years every year dexa scan should be done. Early diagnosis is paramount. Annual checkup, physical activities are important, avoid smoking, adequately intake zink, calcium, vitamin d. Manage iron, endocrine.
Dr Amita Mahajan spoke about various drugs: Pharmaceutical induction of gamma chains in thalassemia. 2 alpha 2 beta chains make hemoglobin. HBf. Artificial introduction of gamma chain. Different medicines were introduced but all these are in trial. These are helpful for intermedia thalassemia. Hydroxiurea. Thalidomide - in trial. New thought, new and exciting area, but needs trail
Mrs Tuli told that government/hsct, 100% match, yearly income < 5 lakh, can undergo free transplant- upto 10lakh. 4 hospital identified for this. Govt extending help in prevention and treatment of thalassemia.
Dr Sunil Bhatt talked about Stem cell Therapy: Permanent solution for thalassemia. Idea is to replace marrow. Bone marrow process was briefly explain. Bone marrow is collected from donor in one or two sittings based on health. stem cells collected from blood, blood passed through filter to trap stem cells. Cord blood - 75% success Irrespective of transplant or not, keep iron overload low. Complications: Graft rejection, liver issue, graft vs host.
Gene Therapy: dr Pravas Mishra. Live patient trial going on. Basics, Necker hospital. Germline gene therapy, somatic gene therapy- marrow correction. 2010 a transplant was done successfully. Virus can carry required code into cell. Procedure is same as bmt. No host vs graft complications in gene therapy. Still under trial. We don't know about cost yet. Traits donors are ok. Hyplo identical transplant- realistically understand. Unrelated if 10% match- good. Hyplo transplant are also providing good results. For transplant- age is just number. How better managed patient is that matters.
Oleptiss - studies conducted abroad. Less gi toxicity. Quality of life. Being used for sickle cell disorder as well. No specific user before starting oleptiss.
Supplements- everybody needs if diet is not proper. Same goes with thalassemia. Only if you are deficient, then you need supplement.
Hydroxyurea on major were disappointing. Similar drugs are under trial. Not approved yet.
Faculty on Dias was felicitated. Xolitrinics acid for making bone stronger. If vitamin d , calcium is proper. Once is three months. Try to make bone stronger naturally. Go out play. State health authorities doing great for hemoglobinopathy.
Mr Jackie Shroff visited and interacted with patients. He answered few entertaining questions and shared his initial struggle in Bollywood. Patient and parents took photographs with him.
Ms Deepali Jain Exercise in water, aqua olympics. Water has miraculous capability to heal. May not be cure but stops further degradation. Advantage - weights less in water so it's easy to exercise in water. Life style change. Help yourself. Muscle ache, do not over burn. Spend min 30 min in spool. Bone density can be increase with water exercise. You do not need to be a swimmer. Just walk in water can help. 10 min in water is same as 30 min in gym. Specially good for thalassemia. Natural painkiller. Risk of injury in wateis very less. There are lot of exercise in aqua. Hydro static pressure keeps massaging the body. Water regulates body temperature. Also there is no fatigue. Precautions- make sure pool is maintained with proper hygiene. Hb should be good >10. Increase the timing gradually.

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Thalassemia Society of Pune Chapter is organizing a very informative session on 22nd July,2017 in which Dr M.B.Agarwal who is one of the top most haematologist in India for Thalassemia is invited to give a talk with few more dignitaries who will put light on other essential things that are some major problems in Thalassemia. Please see the attached information

Time: 9am-1pm
9am onwards registration.
10am -12pm: Dr Agarwal's session
12-12.30 : Dietician- Mrs Kamal Palia's talk on nutrition for Thalassemics,
12.30-1 :- Counsellor - Ms Ria Nadkarni's talk.
Date: 22nd July, 2017
Day: Saturday
Venue: Ruby hall Clinic, Cancer building Auditorium, Pune
No language barriers.
Participants: Parents and Patients who are above 10 years of age.
For registration or any other query/detail you may contact on following numbers.
Call: 9270049248- Mrs Doshi.
TSPC office number: 8446716162 (Open from 10am-2pm)
Call or whtsapp on: 9922215735- Kailash Tile
9763740867- Ms Priya Vaswani.
GIVE YOUR CONFIRMATIONS AS SOON AS POSSIBLE!😇

CME on Thalassemia on the Occasion of International World Thalassemia Day on Sunday, May 7 2017.

Those around Pune can join and take the advantage of various subjects.
Dr. Vijay Ramanan going to talk on Novel therapies in management of thalassemia. Please see the attached information


Voluntary Blood Donation Month Celebration

"National Voluntary Blood Donation Month-October" was celebrated by Indian Society of Blood Transfusion & Immunohaematology(ISBTI), Maharashtra State Chapter by felicitating the centurian blood donors from India,Maharashtra & Pune.The beneficiaries of VBD were also felicitated in the form of 50 Thalassaemic children.

Centurian blood donors from all across the country narrated their experiences in a day long program.

The program was blessed by Dr.Ashok Kukade,Founder,Swami Vivekanand Hospital,Latur,Mr.Prakash Nadar,a centenarian blood donor from Mumbai & President All India Paralympic Association,Mr.Sutar,Dy.Editor, Daily Sakal,Pune,Dr.Vivek Saoji,Principal,Bharati Vidyapeeth Medical College,Pune & Office bearers of ISBTI,Maharashtra,Prof.Dr.Dileep Wani(Chairperson),Dr.Mrs.Purnima Rao(Secretary) & Dr.Mrs.Smita Joshi(Treasurer).

The day long program ended with a rally to promote VBD which composed of 300 blood bank workers,50 Thalassaemic children,40 Centurian blood donors & VBD Camp organisers.


Coming Soon Details of - 24th-25th September, 2017. Conference @ Delhi

Frequently Asked Questions

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