Sunday, 30 April 2017

Marrow Donation FAQ's



Question
: I've heard giving bone marrow is really painful. Is this true?
Answer: No, in most cases donors feel very little or almost no discomfort at all.
Question: I've heard they take the marrow directly from your spine. Is this true?Answer: No, marrow is never taken from the spine. When a donation is made directly from a bone it is always the back of the hip (aka pelvic) bone that is used and is always done under anesthesia so the donor feels no pain during the donation process. After the anesthesia wears off most donors report feeling slightly bruised along the back of their hip bone for a few days. Some take over the counter pain relievers like Tylenol while others require no pain medication at all. In a small percentage of donors some nerve damage may occur but this is rare. 

Question: What is bone marrow and how is different from stem cells?Answer: Bone marrow is the spongy tissue located in the center of your bones. The marrow contains the stem cells from which all other specialized cells in your body are formed. The stem cells in your bone marrow are what create the new blood cells your body needs to function. When speaking in terms of donations the words are used to differentiate between the way the cells are collected:
Question: Can you be a marrow match for someone who has a different blood type then your own?Answer: Yes you can be a match. You don't have to have matching blood types to be a marrow match. Marrow is matched by the compatibility of inherited genetic markers, specifically 6 antigens known as your HLA Markers. These markers, not blood type, are what is relevant in finding a marrow match.

Question: I live in a different country than Cristina but want to help her. What happens if I am her match?Answer: If you live in a country with a cooperative registry, your bone marrow or stem cells can be flown to Canada to help Cristina.
Question: How much does it cost to join the registry?
Answer: In all three countries, Canada, The United States and Italy the cost to register is free.
Question: Do I have to give blood to join the registry?Answer: In Canada and the United States you do not have to give blood. Samples are collected using cotton swabs that are gently rubbed on the inside of your mouth along the cheeks.


AssallamuAlykum, 

It has been long years i didn't update my blog regarding my health conditions, It has been almost 5 year now I am still under treatment in Verona, Italy. Keep struggling for my cure, very precisely I am writing this blog to let you know that I am register with Asian American Donor Program and Voluntarily Miss. Kashvi Lalgudi had contacted me for reaching out the Several Islamic Communities in USA for my potential Donor Campaigns. It is my very humble request to all of my Muslim Brothers and Sisters to register them self as a potential bone marrow donor, It really is very simple to register and it is such a heroic deed to become a donor, "so why wouldn’t you just swab and register. Take 5 minutes of your life to help save someone’s life.” 

Looking fwd. your generous support and please reach out AADP: http://www.aadp.org/about/contact/

Barak Allahu Feekum,
Sister Maryam Sana
Inbox me: https://www.facebook.com/curemaryam
My Story: http://cure-maryam.blogspot.com/2013/09/my-story.html

FAQs: http://cure-maryam.blogspot.com/2017/04/marrow-donation-faqs-question-ive-heard.html

Friday, 29 November 2013

Bone Marrow Donor Drive Registration for Pakistani who live in ITALY


بسم الله الرحمن الرحيم

In the name of Allah, the Most Gracious, the Most Merciful

لسَّلاَمُ عَلَيْكُمْ وَرَحْمَةُ اللهِ وَبَرَكَاتُهُl

“May the Peace, Mercy, and Blessings of Allah be with you


"Our Beloved Sister Maryam has been in Italy since last 9th month for her cure, She need bone marrow transplantation & she seeking her marrow match, we can be one to safe her, if our bone marrow match with her. try to register your self here in Italy

While you visit Italian Bone Marrow Donor Registry, Informed them you are visiting for patient Maryam
who had under treatment in @Azienda Azienda Ospedaliera Universitaria Integrata Verona & she had register with Be The Match& Italian Bone Marrow Donor Registry is part of Be The Match marrow registry program.
for more info contact us on facebook.
we needs your pray most importantly,

Urdu Link to understand bone-marrow transpiration. 
Jazak Allah Khair


ہمارے خون میں ایک خاص قسم کا خلیہ ہوتا ہے،جس کی ہماری بہن کو اشد اور فوری ضرورت ہے .اگر ہم سب اپنے اپنے اسپتالوں میں جا کر اپنے خون کا ٹیسٹ کروائیں تو ہو سکتا ہے کہ ہم میں سے کسی کا وہ خلیہ اس بے بس بہن کے خون سے میچ ہو جاۓ تو اس بیچاری کو نی زندگی مل جاۓ گی،آپ کی تھوڑی سے توجہ اور اور تھوڑا سا وقت اس بہن کی زندگی کو خوشیوں سے بھر سکتا ہے.
آپ کو الله اور الله کے رسول کا واسطہ کسی بھی اسپتال میں جا کر انھیں بتائیں کہ آپ midollo osseo خیرات (donare )کرنے کیلئے خون کا ٹیسٹ کروانا چاہتے ہیں،وہ آپ کا فری خون کا ٹیسٹ لیں گے،اس وقت آپ انھیں کہ سکتے ہیں ہم یہ ٹیسٹ ''مریم ثناء ''نامی لڑکی جو ویرونا میں زیر علاج ہے کیلئے کروا رہے ہیں.اگر آپ کا گروپ بہن مریم سے میچ ہو گیا تو آپ کا اسپتال خود بخود ہی ویرونا والوں سے رابطہ کر لے گا.
آپ صرف اس ویب سائٹ کو کھولیں http://www.ibmdr.galliera.it/ اس ویب سائٹ کے پہلے پیج پر ORGANIZZAZIONE لکھا ملے گا اس کو کلک کریں گے دوسرے پیج کے درمیان میں آپ گول دائرے نظر آئیں گے،جس دائرے میں سی ڈی CD لکھا ہو گا اس کو کلک کریں گے تو اٹلی کا نقشہ آپ کے سامنے آ جائے گا آپ جس شہر یا صوبے میں رہتے ہیں اس پر کلک کریں گے تو آپ کے سامنے آپ کے شہر کے BONE MARROW یونٹ کا نمبر آ جائے گا ،آپ اس نمبر پر کال کریں اور ٹیسٹ کے لئے ان سے ٹائم لے لیں .
آپ کی یہ تھوڑی سی توجہ ایک معصوم بہن کی جان بچا سکتی ہے ،الله کے لئے یہ مہربانی ضرور کریں .


Contact info of Italian Registry of 
Bone Marrow Donor 
Telephone: +39-010-5634434 +39-010-5634435 

e-mail: ibmdr@ibmdr.galliera.it
Fax: +39-010-57481999


Sunday, 6 October 2013

بسم الله الرحمن الرحيم

In the name of Allah, the Most Gracious, the Most Merciful

لسَّلاَمُ عَلَيْكُمْ وَرَحْمَةُ اللهِ وَبَرَكَاتُهُl
“May the Peace, Mercy, and Blessings of Allah be with you


Maryam's Physician, Dr. Fabio Benedetti said In the last 3-4 weeks the Maryam disease has changed. At present the prevalent problem is the PNH, that is causing an important hemolysis.
The last Bone Marrow aspiratte in fact is no longer consistent with an Aplastic Anemia: it's very rich of cells, with an expanded erythroid population.
The last week count is: Hb 10,9 g/dl, WBC 5480, with 1589 neutrophils, Platelets 40.000/mmc. I
We have tried a therapy with low dose of steroids in order to limit hemolysis.
According to him, Our daughter is now doing well.
In few days we'll know if the steroids therapy will be effective.

_____________________________________________________________________________________________

Maryam's Physician in Pakistan Dr. Tahir Shamsi responsed regarding my changed syndrome:
"My advise is to consider Haplo-identical parental donor transplant in this situation, haplo identical means half matched. mom or dad or any sibling". 

_____________________________________________________________________________________________

Maryam's Online Supportive Care Physician Dr. Lawrence B. Faulkner from cure2children responsed regarding my changed syndrome:
"It is not realisitc to do an unrelated donor search in Pakistan since there is no registry, same thing for India which shares similar ethnic background. I assume all first-degree family members have been HLA typed. If there is consanguinity, which is quite frequent in Pakistani families, there might be a 5-10% chance than a cousin or uncle/aunt might be compatible. From the blood count reported Maryam does not seem at present to have severe aplastic anemia and BMT may not be necessarily indicated, if so, I agree with Dr Shamsi, partially matched family donors might be the only realistic option even though I am not aware of reports spefically addressing haplo BMT for severe aplastic anemia in the new era of cyclophosphamide post-BMT (a personal communication by Dr Andrea Bacigalupo, a prime aplastic anemia adult BMT expert, was not very encouraging)." 

_________________________________________________________________________________


Wednesday, 11 September 2013

Searching Donors...

بسم الله الرحمن الرحيم

In the name of Allah, the Most Gracious, the Most Merciful


I reached out to A3M asking to search the registry to see if there was a match for me. I am brave and full of hope. I am fighting for my life on my own , all by myself with the help of my Lord & lot of Pray from family & my friends and does not want to give up because I believes that nothing is impossible.”Allah helps those who help themselves”. And so I wants to do everything with my willpower.  Would you give me a helping hand and register to be a marrow donor? 

A donor registration drive is being organized for me [Maryam] and many other patients like me on Pak Day Los Angeles. Please stop by at A3M [Asians for Miracle Marrow Matches] booth and help save a life.


Pakistan Day Parade & Festival 2013
Downtown Los Angeles
Saturday, September 14th, 03-11PM  
Festival Address:1220 S. Figueroa St, 
Los Angeles, CA 
Across from Staple Center &
LA Convention Center.
http://pak-day.com/index.html

To become a donor:
You have to be between the ages of 18 and 44                  
be in general good health                                                       
Be willing to donate to any patient searching the registry.

To register as a potential marrow or stem cell donor please complete a consent form with your contact information, medical evaluation and your signature. 

For more information please call (213) 625 2802 ext.: 104
http://a3mhope.org/
A3M - Asians for Miracle Marrow Matches
244 S. San Pedro St. #503
Los Angeles, CA 90012

My Story...

بسم الله الرحمن الرحيم

In the name of Allah, the Most Gracious, the Most Merciful

My name is Maryam Sana Meo, I am 23 old daughter of M. Saleem Meo, I am From Pakistan, I done my graduation & I was enrolled in M.Sc. & Skip my Master program due to my Illness. I was willing to do PHD in Zoology. I was athletic & energetic since my childhood, I was 12 when I played Table Tennis. I was very active person not only in sports in my studies as well. 
I was very much excited about my Master Program. I didn't think anything was wrong and I chalked it up to being out of shape in my morning work schedule & my daily housekeeping task and hadn’t been performing much, gradually I started feeling weakness & fatigue. I was told by the doctors in Pakistan that I was anemic and needs iron. For a few months I took iron pills and also iron shots with no change in my condition. Later I was also told that I may be suffering from thalassemia. However, there were no clear answers and I continued to feel weak.

Finally, insisted to the doctors that some further tests be done to learn more about what was going on. When a bone marrow biopsy was conducted it revealed that I was suffering from a rare blood disorder called aplastic anemia. I and my family were devastated but we did not lose hope, as my motto in life is “nothing is impossible”.

We embarked on a journey… a journey of hope. After some more tests, I was told that I needs a bone marrow transplant from a matching donor. First, my family was tested to see if there was a match amongst my siblings. No one matched me. I was determined to live and so we started the search on our own…search for a donor, search for an affordable, respectable transplant center. We reached out to hospitals in India, England, US and some other countries. In the end, with the support from her family, friend [A] and a local NGO, We decided to go to Italy for my treatment. 

It was not easy. My family started saving money and finally after sometime was able to get admitted in a hospital in Italy. I am still worried about the funds & my cost of living in Italy but now I am focused on finding a donor to have a much needed bone marrow transplant. There are very few South Asians in the registry. Marrow types could be traced to your geographic origin and so most likely Maryam’s so matching donor may come from hoe own ethnic community. Unfortunately in Pakistan there is no unrelated transplant performed therefore we start search in abroad.
I am 23 years old, once I gets well I hopes to help patients like mine find there miracle. I wants to support them in any way I can, so they do not have to go through the struggles I went through for over two years before I found a meaningful treatment option. I will willing to work for donor marrow programs in my own country to make awareness in other to register them self & safe more precious life.  I vowed to work harder to get back to where I was before.

Contact me: maryam.sana@live.co.uk
Facebook: https://www.facebook.com/curemaryam