The story of Medellin
I’ve been living with rare disease since 2001 when I woke up on a school day and had my vision completely covered by one big black giant floater. Little did I know that my life would change forever that day and I would never see properly again. I was diagnosed with a severe case of chronic uveitis best described as an inflammatory disease in the eye characterised by blurred vision and floaters.. Fast forward 15 years and this rare disease would eventually also lead to severe secondary glaucoma, 7 eye surgeries and a host of medication ranging from immunosuppressants to blood thinners and bucketloads of eye drops. Whilst I’ve lost some vision, I thank God every day I’m still able to see. In 2016 I fell pregnant and by 18 weeks my eye pressure had again risen to intolerable levels. The shunts put into my eye to relieve eye pressure couldn’t cope with the changes pregnancy was bringing onto my body. This was my worst nightmare – needing more glaucoma surgery whilst I was pregnant! The doctors weren’t sure how to fix the issue so we sat on it and waited to see whether the issue would resolve itself. However, at 26 weeks the nightmare became worse when I developed a terrible deep intense itch almost overnight. I tried to ignore it but when you’re unable to sleep due to the intensity of an itch it’s pretty damn serious. My husband finally convinced me to go to the doctor and i went from the GP straight to Emergency in the hospital. I was diagnosed with severe cholestasis with bile acid readings of 280! I was told that bile
acids of even 40 is considered severe as it make the
Blood toxic and can result in sudden fetal demise. This was hard news to
Swallow! I instantly forgot about my glaucoma surgery issues! After hours in hospital they decided it was safest for me and the baby if I stayed while the professors deliberated whether they should take the baby out at a very premature 26 weeks. No one had never seen bile
Acid readings this high and were unsure what to do with me.
After a weeks stay in hospital and regular blood tests, non stress tests to check the Bub and only getting sleep from strong antihistamines (which did nothing for the terrible itch!) they finally decided 26 weeks was too early and let me out of hospitsl armed with MORE medication and a promise to go to hospital twice a week to check on Bub and bile acid readings until i was induced – a date still to be decided on! At this point I was on 4 different oral tablets and 4 eye drops all with the job of managing uveitis, glaucoma and now severe cholestasis. The next 7 weeks of pregnancy was hell. No matter what I did, I itched. The itch was so intense I would scratch all the skin off my feet til I bled! It felt like little ants were crawling underneath my skin and there was nothing that helped. But this was NOTHING compared to the anxiety of losing my baby. I would stay awake at night, itchy and trying to feel whether my baby was still alive. My baby hardly moved so sometimes I would wait for hours in the middle of the night with tears in my eyes, waiting until she kicked. Sleep was non existent and when I finally did get those couple of hours I would wake up with my vision covered in rainbows and fog. The glaucoma was getting worse every day. Those 7 weeks were the longest 7 weeks of my life. I had to convince myself to smile and get on with life even though I was severely exhausted, itchy, snxious and suffering. I was finally induced at 34 weeks with bile acid readings of 218. My placenta was burnt yellow from the bile acids but despite that my prayers were answered….I gave birth to a beautiful, healthy baby girl who defied the odds and thrived in my toxic body. She came out breathing and that’s all I wanted in the world. My baby was coined super baby by the professors and doctors. Despite being 6 weeks preemie she acted like a full termer from day one and her stay at newborn care centre was a short two weeks where she learnt how to grow and feed. My little warrior is now 3 months and thriving! But here I am now with bile acid readings of 20 which i was thrilled about but little did I know still warrants seeing a gastroenterologist, and elevated eye pressure. Surgery seems inevitable and so does a liver biopsy. The problem with my rare diseases is that not enough people have it to warrant further research. In the 16 years of having uveitis and secondary glaucoma I feel the treatment hasn’t really changed all that much. It’s the same issue with cholestasis and unfortunately a lot of women, especially in my case of severely elevated bile acids, lose their baby. I have fantastic doctors (2 opthalmagists, an immunologist, 2 professors who took care of me through pregnancy and now a gastroenterologist ) who I credit my sight and my healthy baby to. However I do feel raising awareness is vital in encouraging more research into these diseases. As such I feel it’s important to share my story. Whilst this story has been long, believe me it’s the shortest possible version of it