Ataxia Pakistan

23/09/2021

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23/09/2021

Its ravishing to read about Morrie's life. It's an exception.








A moving book with lots of lessons and values on how to live life, from a bedridden old lecturer, Morrie. He highlights the simple yet powerful moments in life that we should cherish, forever. A great, moving book, where if you're like me, a note-taker, you'll find yourself furiously scribbling many notes on the values upholded by Morrie, and smiling as you read them, as they touch your heart in many ways possible. If you found yourself closing the book with a huge smile of contentment on your face, with traces of tears trailing down your face, you're not alone. It had that effect on me as well. A peaceful and relaxing read.

14/09/2021

When my mother asked me to read English book last year I selected this memoir(mainly as it has short pages and user friendly book)I probably would finish it in a day and move on. But it isn’t. The small pages and large font only emphasize author Paul Kalanithi’s articulate sentences even greater. It seemed that after every page I had come pause making yet another revelation. All of Paul’s words captivated me, but there was one in particular that specifically caught my attention.
Cancer. Sticks and stones can break our bones but the word cancer, well, that can do much more. These are the two syllables that changed author Paul Kalanithi’s life forever. Everything in his life was laid out perfectly: ready to finish one of the most difficult residencies in medicine, job lined up, beautiful soon to be wife. Snap. All gone, or is it? Paul’s diagnosis looked grim, but he didn’t. His entire life he was searching to truly understand what life is, what it means, and how to live it. Yet he learned more in his final two years than he had in his previous thirty.
This memoir takes you through trials and tribulations giving deep insight into one of the most beautifully creative and intelligent minds I’ve ever witnessed: Paul’s mind. This brutal yet beautiful journey will make you question your daily life choices and give you another outlook on life itself. Paul’s intelligence combined with his grit and passion will make you want to go outside and run a marathon. Each letter, word, punctuation mark; perfectly placed to convey his articulate message of gratitude. Although Paul unfortunately passed before he could fully complete this memoir, his message was well presented. Paul was able to complete one of athe most captivating and cerebral memoirs I’ve ever read. If he were still here to understand the amazing impact and overall success of this memoir, I know he would be the same humble, courageous, and intelligent man that he has been his entire life. When Breath Becomes Air is not for the light-hearted, it is not a book you take on your vacation for a fun plot and somewhat interesting drama. This book gets real, deep, and forces you to think in ways you didn’t know were possible. That is why I love this book, and why you will too.

16/08/2021

To everyone who has shown support to Ataxia patients in one or another. I am so grateful
Thank you.

16/08/2021

Reading well supports you to understand and manage your health and wellbeing using helpful reading. The books should be chosen and recommended by health experts,as well as the people l with same condition their families and carers.
Books will be available to you through any local library. Also you can take help from health professionals to support treatment.

07/08/2021

Received electric wheelchair from HEC through PM WHEELCHAIR SCHEME
Alhamdulillah there were 35students enrolled with me, we became a part of this great initiative taken by our government.

16/07/2021

https://hopeforataxia.org/blog/2021/06/24/ayesha-abeer-looking-at-the-bigger-picture/

Ayesha Abeer – Looking at the Bigger Picture Faces Of Ataxia SCA7, Spinocerebellar Ataxia 0 Ayesha Abeer is a lovely lady from Pakistan who received her diagnosis of SCA type of 7 after two years of testing. She is very active in raising awareness for ataxia in her country through social media and...

09/07/2021

VICO Therapeutics have announced that the US Food and Drug Administration (FDA) has granted orphan drug designation for spinocerebellar ataxia (SCA) therapy VO659.

VO659 is a therapy designed to lower the levels of the mutant protein which causes SCA. Orphan drug designation is a status given to medicines which have the potential to treat rare conditions, and gives the company developing them some advantages.

In February, VICO had received Orphan Drug Designation for VO659 in SCA from the European Commission. VICO are preparing for their first in human trials, expected to start in 2022.

Read the press releases here: https://bit.ly/31PxnMh and here: https://bit.ly/36aTzTr

U.S. Food and Drug Administration

24/06/2021

A simpler yet descriptive analysis of cerebellar Ataxia
A doctor from Lahore,Pakistan

22/06/2021

We often hear about, "dying with dignity," but isn't it more important to live with dignity? To live our lives with not only the respect from others, but first and foremost, respect for ourselves? When one lives with an affliction that results in so many physical challenges, understandably respect for oneself may be compromised. The inability to walk properly (or at all), impediments to speech, the tendency to fall, or drop things from unsure hands can cause embarrassment at the least, and commonly, disgust and heartache.

But should these physical abnormalities impact the dignity we see in ourselves? Or should we look much deeper, beyond those mere physical traits to find the dignity with which we desire to live? Without question, how we conduct our lives surpasses any physical characteristic in measuring respect and dignity. We are called to this life to assist, help, comfort, love - actions that come from the mind, heart and soul. If we partake in these, regardless of our physical abilities, we can be assured of dignity and self respect in our being. More than that, others will see us in that same light - a dignified example to be emulated, one that inspires others to achieve similar results.

Yes, dying with dignity, when the time comes, would be nice, though it's often beyond our control. What we can control, though, is the dignity with which we live our lives. May we all realize that as we seek peace and purpose in our being.

20/06/2021

The Story of a young powerful girl who is independent in all aspects of life

18/06/2021

°°°My Story°°°
I was born at Risalpur Air Base (KPK) on 14th December 1969 as a normal child .
When I born my weight was 4 pound.
Dr. Suggested me Ostermilk (powder) after 2 and half months I was much healthy . After some months I visited Mother land. my grandfather took a snap of me as he wants to send it to Ostermilk competition but unfortunately he died.
When I was 4 years old my parents felt something wrong in my spinal cord. They took me to doctor of PN shifa hospital Karachi. Doctor did a thorough checkup of me and after a complete checkup report diagnosed me Scoliosis at that time I was 5 years old .
They started treatment. This treatment was very painful. I was getting schooling and treatment at Karachi but suddenly my father got posited to Chaklala and we had to leave Karachi .
Scoliosis treatment continued with infrared rays and physiotherapy after moving to Chaklala but my spinal cord curve was increasing day by day curve was increasing towards right out. Doctor advised to quit schooling so I left my school in 5th standard. After some days I started facing muscular dystrophy I was getting weak day by day . Now I also refer to our local physiotherapist to save my muscles. On the other side I got body braces to cure my scoliosis from CMH Abbottabad During all of these treatments I got 15 years old. I took every type of treatment from Homeopathic , Herbalist and Yoga experts ect but my muscular dystrophy kept increasing .
I got referred to Neurologist by the doctors of CMH Rawalpindi finally that Neurologist diagnosed me Friedrich Ataxia in 1990.
Doctors told my father that some of his treatment is possible in US. In that time one day we saw a documentary on TV that USA is having successful scoliosis surgery. That surgery was very expensive. We contacted USA's hospital and remain in contact till one year via fax.
With in a few years me and my father went to New York . Doctor start the whole process of diagnostic again they conducted all of the tests again after that they also diagnosed Friedrich the type of Ataxia . They told that scoliosis and muscular dystrophy both are because Friedrich Ataxia.
one of the Doctor from doctor's board said that the speed in which my muscles are getting weak if the same speed continue I may not reach till the age of 45.
Discharged from hospital after 45 days Doctors said that if we contacted surgery of scoliosis, scoliosis will recover but it will be not effective for my walking problem instead there is a possibility that after surgery my muscles start weaken up even fast.
So we changed our plan for surgery.
I returned Pakistan after 6 months.
Just like in my childhood Doctor suggested me Ostermilk on way back to Pakistan American Doctors suggested me Ensure Milk but I ignored their suggestion after taking it a few months.
I started using Wheelie after 2 year of my returned.
Now I am 53 years old (2021) using multivitamin & still fighting with FA.
Syed Asim
°°°میری کہانی میری زبانی°°°
میں رسالپور ائیر بیس (کے پی کے) میں ۱۴ دسمبر ۱۹۶۹ کو پیدا ہوا پیدائش کے وقت میرا وزن ۴ پونڈ تھا ڈاکٹر نے وزن بڑھانے کے لئے Ostermilk استمال کرنے کا مشورہ دیا Ostermilk کے استمال سے میں ڈھائی مہینے ہی میں خوب موٹا ہو گیا بعد ازاں جب ننہال گیا تو ناناابو میری صحت سے بہت متاثر ہوئے ان نے Ostermilk کے ڈبوں پر بٹھا کر میری تصویر لی وہ کہتے تھے کہ اس تصویر کو Ostermilk کے عالمی مقابلوں میں بھیجیں گے مگر خدا نے انہیں مزید مہلت نہ دی۔
جب میری عمر ۴ سال ہوئی تو والدین نے میری کمر پر ابھار محسوس کیا والدین مجھے پی این شفا ہاسپیٹل لے گئے جہاں پوری توجہ تفتیش سے تحقیق ہوئی بلآخر ڈاکٹرز نے Scoliosis کی بیماری diagnosed کی اس وقت میری عمر ۵ سال تھی یہاں سے Scoliosis کے علاج کی ابتدا ہوئی۔
کراچی میں میرا صبرآزما علاج اور سکولنگ جاری تھی کہ ابو کی چکلالہ ائیر بیس پوسٹنگ آ گئی۔
چکلالہ آ کر Scoliosis ٹریٹمنٹ انفراریڈ ریز اور فزیوتھراپی سے جاری تھا مگر سپائنل curve بڑھتا ہی جا رہا تھا جو رائٹ آؤٹ کی طرف بڑھ رہا تھا ڈاکٹر نے سکول چھوڑنے کا مشورہ دیا لہذا 5ویں کلاس سے سکول چھوڑ دیا اب مجھے muscular distrophy بھی شروع ہو چکی تھی میں دن بہ دن کمزور ہو رہا تھا مسلز کو بچانے کے لئے مقامی فزیوتھراپسٹ سے بھی علاج شروع ہوا پھر cmh ایبٹ آباد سے Scoliosis علاج کے لئے باڈی بریس لگی۔ اب عمر ۱۵ سال ہو چکی تھی ہومیوپیتھک، ہربل ٹریٹمنٹ، یوگا ایکسپرٹ ہر طرح کا علاج ہوا مگر muscular distrophy بڑھتی ہی رہی
مجھے cmh راولپنڈی کے ڈاکٹروں نے neurologist ڈاکٹر کو ریفر کیا بلآخر اس نے 1990 میں مجھۓ پہلی مرتبہ friedrich ataxia ڈائیگنوز کی
ڈاکٹر نے مشورہ دیا کہ امریکہ سے اسکآ کچھ علاج ممکن ہے انہی دنوں ہم نے ٹی وی پر دیکھا کہ امریکہ میں Scoliosis surgery بہت کامیابی سے ہو رہی ہے یہ سرجری اس وقت بہت مہنگی تھی ہم بزریعہ fax ایک سال تک رابطہ میں رہے
پھر کچھ عرصہ بعد ہم نیویارک چلے گئے ہاسپٹل والوں نے سرجری چھوڑ کر ان پہلے نے نئے سرے سے ڈائیگناسٹک شروع کر کی تمام ٹسٹ دوبارہ ہوئے آخر میڈیکل بورڈ نے بھی ataxia کی قسم friedrich ڈائیگنوز کی۔ اور اب بتایا کہ scoliosis اور muscular distrophy اسی friedrich ataxia کی وجہ سے ہے ڈاکٹروں کے بورڈ کے ایک ڈاکٹر نے کہا تھا کہ جس تیزی مسلز ناکارہ ہو رہے ہیں اگر یہ رفتار نہ رکی تو یہ ۴۵ سال نہیں دیکھ پائے گا ۴۵ دن ہسپتال میں داخل رہنے کے بعد ڈسچارج ہوا ڈاکٹرز نے کہا اگر Scoliosis کی سرجری کی تو Scoliosis تو ٹھیک ہو جائے مگر چلنے میں فرق نہیں پڑے گا ممکن ہے سرجری سے مسلز بہت تیزی سے ویک ہو جائیں۔ لہذا سرجری کا ارادہ ترک کرنا پڑا۔
جیسے بچپن میں ڈاکٹر نے مجھے Ostermilk لگوایا تھا اسی طرح ڈاکٹرز نے واپسی پر مجھے Ensure milk لینے کی ہدایت کی جو میں نے کچھ عرصے بعد نظر انداز کر دی۔
۶ مہینے بعد نامراد واپسی کی راہ لی۔
واپس آنے ۲ سال بعد وئیلچئیر کا استمال شروع کیا۔
آج (۲۰۲۱) میری عمر ۵۳ سال ہے صرف ملٹی ویٹامن استمال کرتا ہوں اور friedrich ataxia سے نبردآزما ہوں۔
سید عاصم

18/06/2021

This is Ayesha Abeer Fatima
A 22 year old girl who was diagnosed with Ataxia in my teens . It was a hard truth to swallow as its progressive and incurable. I inherited it from my father and no one else in my family has Ataxia,It is my goal that every Pakistani must know about Ataxia so they are aware of it,to motivate others like me and share there problems which would simultaneously create a positive impact.

17/05/2021

Ataxia is a disability which lessens the power in one individual. It participates with motor nerves and its gait is severely affected.
In SCA TYPE 7 eyesight weakens, gait is affected and we have no power, with less strength we can do things which others cant. We are differently able people.

17/04/2021

Join hands with us with our support group meeting

11/04/2021

The European commission Grant's orphan Drug Designation VO569. VO569 Is designed to lower the levels of mutant protein which causes SCA
Read the press release
https://vicotx.com/european-commission-grants-vico-therapeutics-orphan-drug-designation-for-vo659-an-investigational-therapy-for-spinocerebellar-ataxia/

30/03/2021

Neuromodulation of the cerebellum rescues movement in a mouse model of ataxia
The International Neuromodulation Society defines therapeutic neuromodulation as “the alteration of nerve activity through targeted delivery of a stimulus, such as electrical stimulation or chemical agents, to specific neurological sites in the body.” An example of neuromodulation therapy is deep brain stimulation (DBS). DBS is a neurosurgical technique, that requires the implantation of electrodes into specific areas in the brain, and the delivery of constant or intermittent electricity from an implanted battery source. DBS can be used to treat various movement disorders, such as Parkinson’s disease, tremor, and dystonia. Please read the Ataxia UK medical guidelines for information about DBS in the management of tremor in ataxia.

The cerebellum is a primary motor control center in the brain, and is affected in many ataxias. People affected by these ataxias have a progressive decline in motor function.

29/03/2021

Throwback to International Ataxia Awareness Day celebrated on 25th September 2020 in Islamabad,Pakistan