From Lemons to Lemonade: How Kay Pursues Her Dreams After a Rare Disease Diagnosis

Khadeeja Munchi – Kay for short! – of South Africa may only be 21 years old, but her spirit and tenacity would confuse anyone into thinking she’s decades older.

“Life is a gift; Breathing is a blessing! Despite tremendous health limitations I strive to live each moment to its fullest, pursuing new adventures within my capabilities!”

Her attitude is infectious; her heart undeniable.

Just last year, Kay was diagnosed with dysautonomia, tachycardia, stage 3 heart failure, and respiratory distress syndrome – among other accompany diagnoses.

As you could imagine – her journey has been quite difficult at times.

She has experienced what she calls “shooting and electric-like pains” in both her right and left hands/arms, which progressed  to full body pain.

After a cyanosis episode, she was put on oxygen and has been dependent on it ever since.

At one point, she was misdiagnosed with a “so-called migraine related hormonal imbalance”  by someone she now realizes/claims was not  medically qualified – and the prescribed  medical treatment caused a bad autoimmune reaction.

Specific medical professionals she needs are often a plane ride away – but her condition makes it risky.

And the list goes on, but what’s Kay’s response to her difficult medical summary? With a laugh and a shrug-

“Just an entire mess going on.. lol. A body that’s too dramatic!”

You wouldn’t blame her if she broke down or bemoaned her condition; I’m sure she has had those moments. But what’s SO INSPIRING about Kay is that she is emphatically uninterested in dwelling on the negative; instead, she redirects the energy she has to find the positive.

“It’s been a rough and tough journey, but I’ve managed to maneuver my way through it all and maintain a positive attitude despite the ups & downs.”

After working as a teacher, her career track proved too strenuous after her diagnoses – but when life gives you lemons…you know the rest ;).

She’s now focusing on becoming a calligraphy artist, since it’s easier on her body while stilling challenging her mind. Calligraphy is quite beautiful! And it sure takes a steady hand and concentration, which Kay seems to be excelling at.

She’s picked out a name for her business: “Kay’s Pencrafts”

“I’m still chasing after my many dreams! Chronic illness hasn’t stopped me from living life, I’ve learnt to live it differently, fight harder & never give up no matter what!”

Furthermore, she started a blog not only as an outlet, but to raise awareness for those living with rare disease.  It’s called “Swimming Through the Waves” and it’s really worth checking out! She writes with humor, sweetness, and candor that is equal parts inspiring and refreshing.

Here’s one sample that seems quite relatable!

People say: You look fit as a fiddler

Most Drs assume: she’s a faker

Aaaaah!!! If only they could see; Internally my body wreaks havoc to 1 of an only type complicated disaster.

 Click here to read more!
 The level of inspiration is MAX. There’s nothing we can’t do if we have the will to do it.
I’m particularly inspired by this blog entry that waxes some wise words about support systems. After all, PatientWorthy is nothing less than a greater extension of a support system, where we celebrate life in the face of struggles each and every day. I’ll let Kay’s words bring us home…

“There are times where the supporter is in need of support, the stronger one is in need of strength, the lover is in need of love, the backbone who holds everything together is in need of a backer herself or himself.

There are times when experiences dismantle us & our own pillars tumble to the ground….

And it is, during those times where we depend on family & friends reassuring support to help us stand & build those pieces back up, even higher!”

PatientWorthy is here to follow your lead, Kay – to build up high a platform for you and everyone facing adversity!

Are you inspired by someone with a rare disease? Share your thoughts, and your hopes, with the Patient Worthy community!

To learn more about Dysautonomia, check out our partners, Dysautonomia Advocacy Foundation.

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