I did not know that I was born with Von Willebrand’s disease (vWD) until I was seventeen. Since my menarche I knew that the way I bled was different from other females. I ignored this fact, but it was in my subconscious mind. The news of my disease came to me as a shock even though I had been waiting for an answer.
Five years back, I went to one of the reputed hospitals in my country for a Gastroenterology consultation. The doctor examined me and suspected pathology related to the pelvis. He advised me to consult a Gynaecologist for further investigations. When I went to the gynaecologist, I experienced a different scenario. After examining me for pelvis pathology the gynaecologist came to a conclusion. There was inflammation in my pelvis, but it was not serious. Suddenly the doctor asked me about the menstrual cycle and profuse bleeding. I told her that my menses continued for more than fifteen days. The gynaecologist advised me to get some initial blood tests done as early as possible. My family history was taken into account. Ultimately I was referred to a Hematologist. It was now quite clear to me that a bleeding disorder runs in my family.
After blood screening tests I was diagnosed with vWD. My hematologist provided me with treatment. Initially I was given oral contraceptives, which did nothing for me. Rather they made my bleeding worse. After the oral contraceptives did not work, I was given tranexamic acid tablets. The doctor thought that this would control my profuse and severe bleeding. To my surprise it did not work for me either. After few months I decided to discuss the matter with my hematologist.
I thought that it would be harsh to stop the treatment on my own without consulting my doctor. I believed my hematologist would feel insulted or ignored if I stopped the treatment. I did not have a medical background with specialization in clinical hematology, so I kept taking the medicines. However, I was able to make the doctor understand that tranexamic acid was actually ineffective for me. My hematologist not only considered my request, but also provided me information about other treatment options.
At that time I learned about Desmopressin nasal spray. I wanted to try it, but I could not find the spray anywhere. Then I made an application to MSD (this department is responsible for importing life saving medicines for patients from abroad and various regions of India). A fax was sent to a pharmacist in Middlesex (UK). The pharmacist sent the desmopressin nasal spray in a lesser strength used for diabetes mellitus. All my expectations were shattered when I discovered that the spray I received was of no use to me. I had a sense of hopelessness.
The last treatment option was factor injections. My hematologist was not in favour of starting factor infusions. The reason behind my doctor’s “NO” to factor infusion was the fear of acquiring diseases like Creutzfeldt Jacob disease, HIV and Hepatitis. I feel that it is just a matter of chance that I may get one of these diseases. I convinced him to change his decision and start the factor therapy. Now whenever there is a bleeding episode I have factor infusions.
I must tell you that my doctor did not make me aware of my disease. I tried my best to learn about every aspect of my disease so that the decisions regarding my treatment strategies are appropriate for me. My mother encouraged me a lot in learning about vWD. She gave me a book entitled “Clinical Hematology in Medical Practice” by G.C. de Gruchy. It has helped me to widen my knowledge about bleeding disorders.
One thing which is extremely important to me is to know about all aspects of the disease. If a patient is well equipped with knowledge, then it becomes easier for the patient to be active in decision making.
The key to awareness is knowledge about the disease. Bleeding disorders in women are unusual. Even medical and nursing professionals may not be aware that bleeding disorders can also affect women in a drastic way. The symptoms of bleeding disorders in females are manifested in a different way than men. The process of getting a diagnosis of a bleeding disorder becomes complicated by various influencing factors. Moreover, the treatment provided may be ineffective if the disease is not diagnosed appropriately.
Special clinics may be established, which give attention to the symptoms of women suspected of bleeding disorders. A counselling committee at every hospital could provide authentic and appropriate information to newly diagnosed women about their specific bleeding disorders. Informative leaflets could also be useful in creating awareness of the general public. Discussion groups could provide a platform for women to interact and communicate about their current condition with others with bleeding disorders. Workshops, seminars and conferences including research and scientific advancements would be helpful.
The goal is to address the unheard voice of each and every female with bleeding disorders around the globe and bring them relief, comfort and happiness. This will help to make the future of women with bleeding disorders bright and secure.
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