I come from a family with bleeding disorders so it did not take me long to be diagnosed with vWD type IIA at Children’s Hospital. Since I was 10, I had been a part of the Bleeding Disorder community having gone to Camp Bold Eagle in Michigan, a part of NHF’s National Leadership Institute, and now currently I am the liaison for the women’s booth at the Glasgow WFH event. I’ve never looked at vWD as a disease, I’ve always looked at it as an opportunity to network and meet people with the same interests as me. I am proud that WFH is globally recognizing women and girls with bleeding disorders.
Hi,I am Anupama.I am a dentist. Hemophilia runs in my family.My only brother,Athul, has severe deficiency of Factor VIII. My maternal uncle was Hemophilic too.
I had symptoms all these years but found out that I have only 25% of Factor VIII this December, at the age of 32.
I have always had symptoms of bleeding disorder in the form of excessive and prolonged menstrual bleeding and joint pains.But I was diagnosed with a low level of Factor VIII (25%)only in the last December, at the age of 32.
Even with the family history of Hemophilia, potential carriers with symptoms are not getting screened for Factor deficiency.I was first treated for PCOS,later another gynaecologist said my sonograms was not suggestive of PCOS.
Most of the female bleeders, especially symptomatic carriers go through this turmoil.
My mother had severe menorrhagia since puberty and got total hysterectomy done a decade ago for the same.Her mother had severe bleeding complications during her ninth childbirth and her doctor had stated that her survival of the same was nothing less than a miracle.
I have been volunteering for the Hemophilia Society in my city,Hemophilia Society Calicut Chapter, since its formation in 1999 and am the KeyPerson of the Chapter since 2015.
We have been advocating for free factor therapy and a Comprehensive Hemophilia Treatment Centers in our city with the state Governent of Kerala.
Our works have been fruitful and the State is providing Factor therapy to registered patients through a scheme called Karunya Benevolent Fund.The State’s Social Security mission also provides a monthly pension of Rs.1000 to registered PwHs.
Because of our continuous efforts, Coagulometry and inhibitor screening has been started at Government medical college, in my city,Calicut in November 2017. I had my Factor level checked at the same centre
I am happily married to Hemant,who is a person with Hemophilia A , with inhibitors.
He is a digital marketeer and has been actively volunteering for his society,Hemophilia Society Hyderabad Chapter and nationally as an Executive Committee member of Hemophilia Federation (India).
We truly believe that Persons with Hemophilia and other bleeding disorders can live a normal,productive life if they have access to proper management of the condition.
And making that true is the aim of our life.
Thankyou,
Dr.Anupama Pattiyeri
With a little bit of luck…..
In 1979, and at the age of 2 weeks, one of my fingernails bled. The pediatrician asked my parents to put pressure on it using bandages. It never stopped. A few weeks later, I suffered an intracranial bleed which led to experimental surgery. During that time, the Hemophilia Treatment Center team (from the Puget Sound Blood Center now called Bloodworks), working with others, discovered that I was born with a severe and rare congenital bleeding disorder called factor V deficiency. No one else in my family had a bleeding disorder, so it was considered to be a mutation. They used FFP during my surgery and afterwards which helped my blood to clot. From that time on, my life unfolded into a series of unintended consequences and complications sometimes referred to as comorbidities.
The experimental surgery included removal of brain tissue causing seizure disorder and neurological deficits. I have developmental delays and a weakness of the entire left side of my body. I experienced grand mal seizures a few years ago. This meant it was time to change seizure medications as they were no longer effective. The trial-and-error to find the right medication was a complicated process because the seizure medications I needed to take caused bleeding. Now with an ongoing possibility of serious bleeding, I am infused with FFP prophylactically twice each week.
I want to thank the many volunteer blood donors who donate their time and FFP. I am so grateful.
I am now 37 years old and hoping to be lucky enough to have a company create a factor concentrate for those who have factor V deficiency. I want to be able to safely travel to Italy, to see where my parents were born.
If you have any questions, please contact marcomm@wfh.org.