Happy World Rare Disease Day!

Yesterday something unpleasant happened to me, but it was also a useful lesson and experience.

Semalam saya ke klinik kesihatan. Asalnya saya pergi untuk sebab yang lain, tapi tiba-tiba saya berada dalam situasi yang lain. Unexpected.


Saya disuruh melakukan pap smear (ujian saringan kanser pangkal rahim).


Ok. Saya tak ada rahim. Sebab itu saya tak pernah lakukan pap smear. I informed the doctor, but she still insisted that I do a pap smear. Especially because my family has a history of cancer. Saya memang takut dengan kanser. Jadi walaupun saya tak bersedia secara mental dan emosional untuk tiba-tiba lalui pap smear, saya cuba kuatkan hati.


Dalam bilik Pink Ribbon, ada dua orang jururawat. Dua-dua pucat terkedu bila saya kata saya tak ada rahim. "Hah? Ada eh macam tu? Boleh eh macam tu?" respon mereka antara percaya atau tak. Mereka lakukan juga pap smear ke atas saya. SANGAT SAKIT. Saya tak ada rahim, kan. Imagine something being forced into your lower body, only to hit a wall.


Mereka berhenti dan panggil doktor di sebelah. Doktor lain daripada doktor yang pertama tadi.


Second doctor- her reaction was pretty much the same when I told her that I don't have a uterus. "Really? How come? Congenital?" And she did the pap smear on me anyway. Second time. SANGAT, SANGAT SAKIT. The pain and my anxiety were like at the tip of my brain. She finally gave up and said, "Betullah. Tak bolehlah. Dia memang takda rahim."


Wasn't that the first thing I said?


Saya tak salahkan mereka. They were just doing their job. They were looking out for me. They were caring and concerned to offer me pap smear. Cuma mereka kurang faham dan kurang tahu tentang sindrom MRKH. I was their first. There are probably millions of rare syndromes in this world- manalah mampu nak hafal semua. Saya faham. Kita belajar.


Ini bukan kali pertama, ketiga, atau kelima saya jumpa health practitioners yang tak tahu tentang MRKH. Dah banyak kali. This is normal for a rare syndrome. Health practitioners pun manusia biasa.


Keluar dari klinik kesihatan, saya terpaksa berehat sejam dua jam dalam kereta sebab sakitnya belum hilang. But it sure made me realize one thing: My work as an MRKH advocate is far from done. I need to create more awareness in my beloved country.


Semoga Tuhan bantu saya untuk bantu orang lain. _

Info: Sindrom MRKH ialah keadaan di mana perempuan lahir tanpa rahim dan tanpa laluan faraj. Ia terjadi pada 1 dalam setiap 4,000 ke 5,000 wanita seluruh dunia. // MRKH Syndrome is a condition where females were born without uterus and without upper vagina. It happens to 1 in every 4,000 to 5,000 women all around the world.


bit.ly/mrkhmalaysia


#sindrommrkh⠀⠀ #mrkhmalaysia⠀⠀ #raresyndrome #mrkhsyndrome⠀⠀ #mrkhawareness


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