My name is Khadeeja.. I am 21 years of age. The journey of life with a rare disease began for me in March 2016 when I was 19 years old. To cut a very long story short, prior to the onset of my illnesses I’d experience chronic migraines since the age of 14. Last year January I was prescribed a wrong medicine for the #migraines which caused malfunction of my endocrine system bringing about Autoimmune Neuropathy affecting my Small Fibre Sensory & Autonomic nerves,& Vagus #NerveDisorder (VND ) causing #Gastroparesis. The symptoms of Gastroparesis began last year June, from being a very good eater, I suddenly began losing my appetite; feeling hungry but after eating 4 or 5 small morsels I am then full; belching; #GERD; nausea; vomiting; tummy cramps; heartburn; indigestion; bloating that makes me look as if I’m 3 months pregnant… These are but some of the symptoms.
Tests then began & it was finally revealed I have VND. February this year I landed up in hospital on IVs due to dehydration when flare ups of my gastroparesis allowed nothing that went down to stay in. After the drips refueled my body I was given a week to adopt a lighter diet consisting of only soft pureed foods; no meat besides a bit of fish; no spices; & no heavy rough foods with fibre etc.. Mainly soups & veggies as well as liquids to be taken in smaller quantities but more frequently – if this did not work I would have to go in to havea feeding tube inserted. Thankfully this method & diet works but not on its own though, only with a variety of about 5 medicines specifically to aid the digestion process… if I do not take these 5 medicines alongside meals then my body is at total war with me!!!Adapting initially has been hard, it took a very long while but still is a challenge as many do not understand, each GP warrior has their own unique story of the struggles they face because each one’s type & severity of it is different.
Although I am not on a tube, food options are limited in so many ways, & eating the same things all the time become tiring & I am always searching for new food ideas that my stomach can tolerate. Random fun stuff like planning on going out to eat on weekend at a restaurant are not much of an option – initially I would become emotional watching my family sitting & eating some my favourite foods, desiring to do the same but unable to. When they used to eat I’d walk away; I’ve now passed that stage.Having a normal weight according to my height & body structure prior to GP, over the months I’ve lost a lot & remain 12 kgs underweight, we’ve been trying but getting it up higher is a mission not yet accomplished. So yes, it’s been a long road which has surely made me stronger despite the ups & downs. Each day is different, some days easier & others with periods of flare ups.
For example: sometimes soft smashed up rice will digest & other times it will not! My food goes with me wherever I go like baby food. ~ GP will not push me down. I have fought it & will continue until my last breath ~ ♡♡Apart from gastroparesis I have also been diagnosed with the following:
–#MitralValveProlapse with associated coronary artery spasms
–#ExertionalDyspnoea – heart failure class 3 out 4.
–#LongQT Syndrome & Irregular heart rhythms.
Investigations are still continuing as my recent Autonomic dysfunction test results indicated towards more cardiac issues; but this is a brief summary of my story fighting multiple chronic illnesses – some of which are life threatening & the rare nature of it confusing many doctors. Thank you for allowing me to share my story I hope to reach out to others struggling from similar / the same illnesses as mine. To all fellow rare warriors: My message to you is to please do not give up hope. You are not alone; & hang in there.. Together we shall get through this.I am here, please give a shout out
☺☺To all caregivers: You are heroes!