آپ ایک تھیلیسیمیا مریض کی مدد کیسے کرسکتے ہیں؟

March 11, 2018


EMPOWER THALASSEMICS..!

December 6, 2016

ہم نے ایک فیس بک گروپ تشکیل دیا ہے جہاں آپ اپنی جاب ، صلاحیت یا بزنس کی مشہوری کر سکتے ہیں۔

اگر آپ کوئی بزنس کر رہے ہیں، اپنے پروڈکٹ پوسٹ کریں، بلا تکلف ہو کر کسٹمر بنایں، سیل بڑھائیں۔

اگر آپ کوئی جاب کررہے ہیں تو جاب کی تفصیلات پیان کریں، کیا معلوم آپ کو کوئی پارٹ ٹائم جاب مل جائے جو آپ باآسانی گھر بیھٹے کر سکیں۔

اگر آپ میں کوئی صلاحیت ہے، جیسے کہ پینٹنگ، کمپیوٹر گرافکس، ویب ڈیزاننگ یا جو بھی صلاحیت ہے، اس کے نمونے اپلوڈ کریں۔

اس گروپ میں سیلرز صرف اور صرف تھیلیسیمیا میجر ہونگے اس کو آپ ہماری ایک چھوٹی سی کاوش سمجھیں تاکہ دنیا کو یہ بھی پتا لگیں تھیلیسیمیا میجر بھی کتنے باصلاحیت باہمت ہوتے ہیں۔

انشااللہ اس گروپ سے ہمیں بہت سے مواقع ، جاب ، آفرز ، سیل ملے گی جس سے اشااللہ تھلیسیمیا میجر اور خود مختار ہونگے۔

We have created a facebook group, where you all can advertise about your job, business, skills etc.

If you have any business, post pictures of the products you offer, generate sales.

If you are doing any job, you can define the nature of job, maybe you can get a part time job which you can do from home?

If you have any skill, like painting, computer graphics, web designing, etc.. show your work and generate sales..

Our group sellers will only be thalassemia majors, consider it a small contribution towards society to empower thalassemia majors & to let world know that thalassemia majors are no less than anyone 🙂

inshaAllah we will generate more sales, more leads, more offers from this group and will empower our fellows inshaAllah.

www.facebook.com/groups/YSG16


EMAIL..

December 6, 2016

Email received yesterday at our official email id from a thalassemic.
ff
“Assalam-0-alikum,

Respescted Sir/Madam,

I am a Thalassaemic Major Patient and i am getting blood transfusion from husaini thalassaemia center ,Would like to take your kindly attention in some problems which me & my other thalassaemic frnds face in our thalassaemia center.

They provide us Desfonak 500 & Deferoxir 500 injection which is useless for iron chelation, because of that low quality injection we face body pain and also our body iron is not getting out with this type of local IRANIAN injections.

Another problem is about environment , The temperature of transfusion room is very high and hot, because always AC is not working and fans are not enough for the room capacity.

So i humbly request to All trustes of Husaini Thalassaemia Center and All members of thalassaemia Federation, kindly take immediate action about this matter.

Do some action instead of only speeches in thalassaemia conferences.

Thanking you,
Your’s Truly”

Sadly we don’t know the identity, the sender doesn’t wish anyone to know who is he/she.. since he is afraid and says “I unable to disclosed my identity because i am registered patient in husaini and if they know me they creates problem for me.”

We hope the trustees of Husaini get the email and resolve the issues of our thalassemia fellows.

If anyone want to stay anonymous and want us to share any problem please let us know, we will raise the voice inshaAllah.

If anyone knows trustees or any high official at Husaini please forward this to them, you might help thalassemia community 🙂


WINTER DRIVER 2016

December 6, 2016


Just like last year  we aim to cover 3 to 5 thalassemia centers this winter too, inshaAllah we will gift our fellows some injection desferal [180 Rs each], some infusion pumps [6000 each], some hoody [400 each] & some shawls etc.Last year we distributed desferal injections, infusion pumps, hoody, shawls to our fellow thalassemics in Fatimid Foundation Karachi, Hyderabad, Rashidabad, Khairpur & our team from Bahawalpur distributed them in Bahawalpur Victoria Hospital.

InshaAllah with your support we will do it again this year 🙂

If you wish to donate please contact us 🙂

Our last year activity pictures can be seen here :


5 Years & Counting..

October 23, 2016
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Transamin

We began our Sponsor a Child program in 2011 with a hemophilia patient on a special request, since then Fight Against Thalassemia has sponsored a lot of thalassemia fellows.. some for treatment, for education, tests, etc.

Alhamdulillah not a single month passed when any fellow enrolled with us wasn’t provided their required medicines and all this has been made possible with the help of our amazing donors, their trust has made this journey easy for many of our fellows.

5 years and counting  thank you so much everyone for the support, help, love and trust 


World Blood Donor Day 2011

June 14, 2011
World Blood Donor Day 2011

World Blood Donor Day 2011


International Thalassemia Day!

May 8, 2011

Happy International Thalassemia Day =)
Happy International Thalassemia Day to everyone! specially to the Thalassemics! rise and shine.. because you are special =)


FAiTh in TIF Magazine =)

January 17, 2011

Alhamdulillah FAiTh [Fight Against Thalassemia] is gaining its place in people’s life, heart, mind and now it secured its position in TIF [Thalassemia International Federation] Magazine 🙂

FAiTh featured in TIF Mag

FAiTh featured in TIF Mag

Please click on image for larger view


In the shadow of Thalassaemia

January 16, 2011

Courtesy: fijitimes.com

On the New Year’s Day public holiday (Monday 3/1/11), I visited an old friend of mine in Korotogo.

As our children played together and our wives caught up, having not seen each other for a number of months, my friend and I sat watching the sunset and shared a few bilo of kava. Our conversation lasted well into the night as he shared with me the struggle, the leqa he faces every day.

You see, his youngest son, Siha, (incidentally about the same age as my son), must travel to Suva every month for a blood transfusion to replenish his red-blood cells. Siha suffers from a genetic medical condition known as Thalassaemia.

According to “The Thalassaemia Patients and Friends” website, thalassemias are a group of inherited, genetic blood disorders that affect the body’s ability to produce hemoglobin, the protein that red blood cells use to carry oxygen to every cell in the body.

Hemoglobin is a combination of alpha and beta hemoglobin.

The alpha and beta hemoglobin genes regulate the production of these hemoglobins.

The effects of thalassemia vary greatly, depending on how many of the hemoglobin genes are affected and how severely they are affected. The most severe thalassemia is called thalassemia major.

This blood disorder was previously fatal during childhood, but has now been reclassified as a manageable chronic condition.

With proper treatment and regular medical monitoring, thalassemia major patients can now lead long productive lives that include education, careers, marriage and children.

While currently the only cure is bone marrow transplant (BMT), there are hopes for treatment to continue to advance and possibly soon see a new cure through gene therapy.

It is very important for patients to comply with treatment, as it will give them a better life now and also help keep them alive to take advantage of new treatments and a cure.

Imagine you or your little son or daughter having to go to hospital every month for the rest of your life for blood transfusion. That is what lies ahead in Siha’s future.

But there is more to it that blood transfusion. It’s more than a case of topping up on blood levels as if the hospital is some service station.

With the regular blood transfusions comes the accumulation of iron in the body, especially in vital organs.

Siha’s family always strive to live positively with thalassemia, but at times it is frustrating having to deal with a chronic illness that consumes an excessive amount of time with transfusions, constant doctor’s appointments, and various other procedures.

The most frustration is the way illness is managed in our country.

To reduce the extremely (and deadly) level of iron in Siha’s body, he is given an injection.

This injection has the effect of bailing out a ship full of seawater with a small piyala (bowl).

As I sat with Siha’s father and heard the struggle to get more effective (and less painful) tablets and other medicines to manage this condition,

I thought how blessed I was that my children are relatively healthy (the exception being a hereditary allergy to penicillin for my son).

I looked at my son and Siha playing together, and thought about what it would be like if the roles were reversed and Francisco-Xavier not Siha had Thalassaemia.

There are currently 4 people in Fiji who are known to have Thalassaemia.

This minority finds it difficult to raise awareness not just in society but in the medical fraternity about their needs and the desperation they feel regarding the lack of proper and affordable medication available for them.

Many doctors are not informed about thalassaemia and the complexities of the disease. Consequently it is often up to patients to educate them.

A routine liver biopsy is invasive and painful. A machine has been developed, a ferrirometer, which examines liver iron stores painlessly and noninvasively. Clearly, such a machine would dramatically improve patient’s quality of life, yet only two ferrirometers exist in the world.

Healing goes beyond prescriptions and procedures.

Healing is listening, caring, answering questions, being honest, and treating the patient as a human being. Collaboration among disciplines is especially important with thalassaemia because the disease affects so many physiologic systems.

The patient and family must be seen as an integral part of the team and children must be encouraged to be proactive in their own care.

Living with a chronic illness has had an extensive impact on Siha’s life and the life of his family.

Thalassaemia has shaped how Siha and his family live and perceive life and it is a driving force in shaping their personalities.

Thalassaemia and the physical challenges that accompany this disease have created an intense passion for living and a deep appreciation for health.

Each day is a gift to be cherished.

There are positive signs that the CWM Hospital and Ministry of Health are willing to assist this, as yet, small group of people living with thalassaemia. I have promised to help Siha and others like him.

One of the first steps to finding assistance is the formation of a support group. If you think you can help or wish to join the Thalassaemia Fiji Support Group, email thalassaemiafiji@gmail.com or call Mahen on 9809453.

May the rest of your week be blessed with simplicity, serenity and spontaneity.

* This article is the opinion of Reverend James Bhagwan and does not necessarily represent the views of the Methodist Church in Fiji and Rotuma, any other organisation or any institution Padre Bhagwan is affiliated with or this newspaper. Email padrejames@gmail.com or visit the blog – http://thejournalofaspiritualwonderer.blogspot.com


Thalassemia in Sindh: Children suffer the most with the blood disease

January 16, 2011

Courtesy: tribune.com.pk

“I have seen broken marriages, deserted children and family feuds just because of this one disease,” says Dr Haroon Memon. He has been treating thalassemia patients for years in interior Sindh and is thoroughly aware of the devastation the disease has and can cause.

Working at the Thalassemia Care Centre in Badin, Dr Memon heads the facility where patients flock from eight districts of the province for a cure. The centre was built under the US Agency for International Development’s (USAID) District Grants Programme in 2005 and now functions with the help of Badin’s district government.

Victims of the inherited blood disorder — that results in severe blood shortage — suffer from an increase of iron in their bodies, diabetes and other major side effects. In the rural parts of the country where poverty, lack of resources and illiteracy result in the late or no diagnosis of the disorder, the social implications become more prominent than the physical ones.   Pakistan is counted among those less-developed countries where thalassemia patients are multiplying at a very fast rate. Although no proper research has been done in the country, experts say almost seven per 100 people are carriers, known as thalassemia minors. The carriers are normal themselves but have the potential to transmit it to the next generation causing thalassemia major.

When two carriers reproduce, there are 25 per cent chances that the child will be normal, 25 per cent chances that he or she will have thalassemia major and 50 per cent chances that the child will also be a carrier, says Dr Memon. Therefore a large proportion of thalassemia patients are children.

There is growing concern that thalassemia may become a very serious problem in the next 50 years – one that will burden the world’s blood bank supplies and the health system in general.

With the requirement of a bottle of blood almost every few days, the life of a thalassemia patient is like that of a car, one whose engine runs on fuel, explains Dr Memon. In such a scenario, prevention  not cure is what needs to be done to fight the genetically transmitted disease.

Beta thalassemia

In Sindh, most people suffer from beta thalassemia, which is one of the most familiar types. It involves decreased production of normal adult haemoglobin (Hb A), which is the predominant type of haemoglobin.

(All haemoglobin consists of two parts: heme and globin). The globin part of Hb A has four protein sections called polypeptide chains.

Two of these chains are identical and are designated as the alpha chains. The other two chains are also identical to one another but differ from the alpha chains and are termed the beta chains. In people with beta thalassemia, there is a reduced or absent production of beta globin chains.

Iron concentration

Dr Memon says that there are patients at his centre who, because of continuous blood transfusions, have developed a concentration of iron in different parts of the body and have to be treated for that. The iron concentrates in the heart, pancreas, liver, spleen and the endocrine glands, he adds.

Such children show signs of a ballooned stomach, broader forehead and jaw bones and prominently bad teeth.

Our job is to maintain the haemoglobin level of the thalassemia patients at 10.5 grams, to control the iron concentration in different parts of the body and to counsel the parents, says Dr Memon.

Law in the making

Concerned doctors are lobbying for a law to be passed for the identification of carriers in the province, informs Dr Saqib Ansari, a haematologist at the National Institute of Blood Diseases (NIBD). “In the year 2010, close to the World Thalassemia Day (May 8), the Sindh Assembly adopted a resolution to make the thalassemia test a pre-condition for nikah, but it could never be formed into a bill,” he says. Dr Ansari claims that this will successfully reduce the danger of thalassemia transmission without stigmatising women.

Meanwhile, Dr Ansari also says that a fatwa has been taken that allows a child with thalassemia major can be aborted before the 16th week.

The government needs to realise that apart from human suffering, supporting thalassemia patients is a huge financial cost, he says. “The disease needs to be controlled before the numbers shoot up.”


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