Thal patients from India !!!

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Offline Zaini

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Thal patients from India !!!
« on: November 07, 2007, 05:20:23 AM »
Hi All,

I wanted to know if someone can help me in locating kelfer in India, From where can i but it in India? coz it's not available here in Karachi right now,I am unable to find local made formula "Ferinil" either,so my father has some buisness contacts in India and he requested them to send us kelfer,but according to them they are unable to find it.HELP!!!

ZAINI.
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Offline Andy Battaglia

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Re: Thal patients from India !!!
« Reply #1 on: November 07, 2007, 05:26:07 AM »
You can try contacting Cipla, the manufacturer of kelfer and ask them to direct you to where it can be purchased in India.

Cipla Ltd.
Mumbai Central
Mumbai 400 008
India
     
Telephone:
   
2308 2891
2309 5521
     
Fax:
   
91 22 2307 0013
91 22 2307 0393
Andy

All we are saying is give thals a chance.

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Offline §ãJ¡Ð ساجد

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Re: Thal patients from India !!!
« Reply #2 on: November 07, 2007, 08:05:17 AM »
Hi Zaini,

What's wrong with getting Ferinill?

Tell me, I will ask JSF about it.
اَسّلامُ علیکم Peace be Upon you
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Offline Zaini

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Re: Thal patients from India !!!
« Reply #3 on: November 08, 2007, 11:23:40 AM »
Thanx Andy,

You are always helpful.

Sajid,

I am unable to find ferinil in Karachi,they say it's not available here,i wonder why? Will JSF people provide us the med?is it possible,if they can mail it to me i'll pay all the charges,or if they want me to handpick it,i'll ask someone to do that also,

Let me know what they say.

ZAINI.
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Offline §ãJ¡Ð ساجد

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Re: Thal patients from India !!!
« Reply #4 on: November 16, 2007, 08:04:10 AM »
Hi Zaini,

I just came back from JSF. They said that you can get Ferinill from "Kashif Iqbal Thal. center" :)
اَسّلامُ علیکم Peace be Upon you
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Offline Zaini

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Re: Thal patients from India !!!
« Reply #5 on: November 16, 2007, 03:00:06 PM »
Hi Sajid,

The problem is that i am unable to locate Kashif Iqbal Thal centre,i heard it already that ferinill is available there,but it's neither on net,nor am i able to find it in PTCL directories,so i don't know where is this centre located.

Thanx for your help anyway,:)

ZAINI.
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Offline §ãJ¡Ð ساجد

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Re: Thal patients from India !!!
« Reply #6 on: November 17, 2007, 07:25:17 AM »
Hi Zaini,

There are few kids in the under active Thal. Community from Kashif Iqbal on Orkut. You can contact them. Hopefully one of them would reply and give directions to Kashif Iqbal. I'll try getting in touch with these kids too and would ask JSF to give me the details when I next visit them.
اَسّلامُ علیکم Peace be Upon you
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Offline §ãJ¡Ð ساجد

  • Beta Thal Major
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Re: Thal patients from India !!!
« Reply #7 on: November 17, 2007, 07:35:48 AM »
Hi Zaini,

I just found their website but is of no use to us as there are no visible contact information (At least I couldn't find it :dunno ) plus the "Help us" form didn't work for me and returned an error.

Maybe you have more luck

http://kashifiqbal.com/helpus.html
اَسّلامُ علیکم Peace be Upon you
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Re: Thal patients from India !!!
« Reply #8 on: November 17, 2007, 08:31:22 AM »
Hi Zaini

As far as my knowledge goes, KELFER is not sold in the medical shops in India. You will have to get a prescription made + fill in the form my Cipla( I do not know if that is needed now).. and go to any of Ciplas distributors to get the medicine.  Your doctor has to mention your requirement for the month.
In Pune, the Cipla's office was in front of the Residency Club.. and their Godwon is located in Hdpasar area. But unless one is familiar with the city, it is not easy to locate it.

Mumbai will be a better place to find them.. why dont your dad'sfriends get in touch with Dr. M.B. Agarwal and ask him about the closest distributor? Or get in touch with any of the Thals in Mumbai and ask where they get their Quota from and what formalities are involved..

Hope this helps
Shikha Mitra


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Kathy11

Re: Thal patients from India !!!
« Reply #9 on: November 17, 2007, 12:24:11 PM »
Question: We have a child on our football team with sickle cell disease, what should we watch outfor?


Answer: 
Thank you for your question, and for taking the special effort to find out more about sickle cell disease. Sickle cell disease can be very different from one person to another. Mainly you need to check with the player's physician about any individual circumstances that make him able or not able to do specific things. I do not have experience with a sickle cell patient on a high school football team, but I do have suggestions based on experience from guiding summer camp activities for children with sickle cell disease, and from reading articles on exercise studies in people with sickle cell disease with normal people.

In general, people with sickle cell disease can be very functional, but they have less physiologic reserve. There have been small studies showing that people with sickle cell disease of different types may not be capable of increasing their exercise to the same level as their peers, may get exhausted more quickly with aerobic exercise, and have higher blood lactate levels after vigorous activity. Self-paced exercise will generally show this limitation, so that the self-paced walking distance or speed is likely to be lower than normal for a person without sickle cell disease. However, additional small studies indicate that training can improve endurance and submaximal exercise capacity in people with sickle cell disease, as indicated by Watts of energy output change in heart rate with exercise and the intensity of self-paced exercise. People with sickle cell disease type SS (sickle cell anemia) or S-beta-zero thalassemia have the lowest physiologic reserve, and those with sickle cell disease types SC, S-beta-plus-thalassemia, or SS-HPFH have better physiologic reserve. People with sickle trait have nearly normal physiologic reserve.

Specific precautions are necessary if the medical history includes:
1) Stroke – watch for neurologic impairments at baseline, possibly at risk for recurrent stroke or seizures.
2) Splenomegaly – watch for trauma to the left flank and abdomen, which could rupture the enlarged spleen
3) Implanted venous access device under the skin (“PortACath,” “InfusaPort”, “Bard CathLink” etc.) – watch for trauma to the device
4) Pulmonary hypertension – cardiopulmonary function may worsen with exercise, arrhythmias also possible. People with a diagnosis of pulmonary hypertension and sickle cell disease probably need clearance from a cardiologist to participate in vigorous sports.
5) Avascular necrosis of the femoral head – risk for further damage to the femur and hip joint with heavy load-bearing. Probably needs clearance from orthopedist to participate in vigorous sports.
6) Asthma – very common in children with sickle cell disease. Manage as with other asthma, but keep in mind that the combination of these 2 chronic illnesses can cause lung function to worsen very quickly (sickle cell acute chest syndrome or status asthmaticus)

General precautions for people with sickle cell disease are
1) be flexible with activity schedule & intensity – allow rest when tired (due to anemia, poor cardiovascular reserve). Pushing to exhaustion is probably not a good idea because lactic acidosis can trigger red blood cells to sickle and cause vaso-occlusive pain.
2) Maintain good hydration. Dehydration can occur more easily than in normal people, because the kidneys are damaged by sickle cells. People with sickle cell disease need to drink more often than normal people under the same conditions, drink in anticipation of heavy sweating & exertion
3) Avoid extremes of temperature. Being either too cold or too hot can trigger red blood cells to sickle & cause vaso-occlusive pain. The person should seek shade, wear hats, avoid excessive air-conditioning, avoid wet clothing. Watch out for chilling during swimming - take a break every 20 min to dry & warm up.
4) Encourage the player to sense his own body’s warning signs, try to head off pain or fatigue. Help the group to be supportive of the player, and enforce rest breaks & reasonable bedtime.


Sincerely,
-Lewis Hsu, MD, PhD
Pediatric Hematologist

For more frequently asked questions please see:  http://www.scinfo.org/faq.htm

I came across this piece of info I  would like to share with the forum.
Kathy

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Offline Ash

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Re: Thal patients from India !!!
« Reply #10 on: November 17, 2007, 04:58:26 PM »
You can try contacting Cipla, the manufacturer of kelfer and ask them to direct you to where it can be purchased in India.

This wont work, even if you knew where the distribution center is they would still not give it you unless you carried a prescription on a form that is pre-printed by Cipla and this form needs to be filled in by a local doctor (not GP only haematologist) then submit it at the centre.

The amount of bottles prescribed on the form never exceed 3 months and you cannot ask extra bottles even if you say that you dont live nearby or have to travel long.

Sorry but I have had this question asked to me since 1995, this is the procedure with Cipla and there is nothing you can do about it.

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Offline Zaini

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Re: Thal patients from India !!!
« Reply #11 on: November 17, 2007, 06:32:09 PM »
Thanx everyone for your replies,

ZAINI.
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