I'm Rare, But Real; I'm a Swati PHighterr

Sakhi
Posted November 28, 2018 from Swaziland
Swati PHighter
This is me now, I've healed this much.

I was inspired to join this community, because I am one of the 'unheard voices' of society. Through this platform I'm hoping I could reach out to many lives out there. I am doing it not just for myself, but for my country and Africa as a whole. I am a 'PHighter', a term used to describe people living with a rare heart, lung chronic disease called Pulmonary Hypertension.  I have always been a child with big dreams, a vibrant and hardworking girl. I've always struggled with breathing problems, diagnosed with severe asthma. I watched children my age outgrow asthma as they grew older, while I just became more severely breathless. It was in my teens that I started to worry, and realise that something was not normal with my breathing, that it was more than just asthma. I battled through school, trying to keep up as I frequently missed classes due to breathlessness. But I made it through until I graduated university. Six months after getting my first job after university, I was diagnosed with 'pulmonary hypertension in February 2016. I fought for my life  the whole year, hospitalised more than the times i spent home. I could not survive even just two weeks breathing on my own, sometimes even just a day, and I would be back in the hospital ward on oxygen support. I spent the whole year indoors, home or in the ward. I watched the world pass me by, yet I was not dead. This was my life until February 2017, an oxygen concentrator was donated for me so that I could go home. 2017, I never saw the ward again, I spent the year home on oxygen support. I started recovering, the oxygen was helping and made a huge difference in my life. My heart slowly began to heal, the swelling went down. I started being able to go out for an hour or so breathing on my own. I started having hope that I will eventually be able to fit into a normal life again. 

2018, I am now able to be out and about for hours or a day breathing on my own. I need the oxygen support only at night during my sleep, it enables me to recharge on oxygen in order to get through the next day. I've been in hospital less frequently or things like catching an infection or cold. Simple thing as a cold is dangerous for people like me. During my recovery 2017 to today, I used my natural writing and copy designing skills to make money while home. I don't make enough, some days I'd go for days without clients. But I'm still pushing, marketing myself on social media as well. I now have a significant portfolio of clients served, which for me is a great achievement. 

My dream is to start my own company that will one day become one of the world's biggest companies with different strategic business units. The first SBU being a media business, which will offer writing, editing and proofreading, graphic designing, photography and videography, public speaking, as well as be home to inspirational magazines and films, amongst other services. I want build a company that will focus on making a difference to many lives, empowering, educating and giving hope to society's unheard voices. I have drafted all the business documents. All I need to do is to start small and grow. 

In summary, I do not take my story as a sob story but as a motivation to use my scar to heal and restore other lives. I have been appearing in my county's local print and broadcasting media, as the first person to come out with the rare condition in my country. My aim is to advocate for our health systems to cover this condition as well, so lives that may be living with it unknowingly in the country can be saved. From my media appearances, a few people have come forward to express similar battles that have dragged on for years without solutions being found. With the team from South Africa that came to my assistance with an oxygen concentrator, we are revived to see the impact that my story is making in the public and medical sector. From my experience, I have learned that despite any tragic turn in life, from the tragedy can emerge a good that will make a difference in somebody's life. So, I am not going to hide my existence, I am determined to make my voice heard, and change a life. One day I may look back and say, I am proud of the woman I have become, regardless of a scarred past. 

With the coming May 5, World Pulmonary Hypertension Day, which sees organisations around the world partake in celebrating the lives of people living with the disorder, I am hoping that through advocating with my story, my country will also be encouraged to partake and support fellow PHighters in our country. Then, our health system can cater for our needs, and have specialist PH doctors, freely available medication, oxygen concentrators and organisations that focus on this condition.

Thank you for this platform, now I can make my voice heard even beyond my borders. Thank you for listening. I am 25 years old now, and a 3 years old PHighter. I pray moving forward I grow with strength every year!

If you would like to read more about my journey, please follow me on Facebook...Cebisa Smally Sakhi.

For mywork portfolio, please visit my Facebook page 'WordS'.

Comments 13

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Jill Langhus
Nov 28, 2018
Nov 28, 2018

Hi Sakhi,

Welcome to World Pulse, dear:-) Thanks for sharing your super inspiring story with all of us. Wow! You're quite the incredible person there with quite the story to follow. You will definitely inspire so many others not only on World Pulse but beyond. I haven't heard of this particular condition before, so I'm glad that you are spreading awareness around it. I'm so glad that you are functioning quite well now so that you will be able to fulfill your dreams easier and inspire so many others. I think you could already easily say that you are proud of the woman you have become?!

You may want to consider submitting this story for the current call for stories "What Gives You Hope?" If so, this is the link:
https://www.worldpulse.com/en/voices-rising/story-awards/89062

I'm looking forward to seeing many more stories from you, and hearing more about your empowerment NGO that you are creating. It sounds great:-)

Hope you are having a great day!

Sakhi
Nov 29, 2018
Nov 29, 2018

Thank you for the warm welcome. Your words are truly encouraging and gives me hope that my story has the potential to touch lives. I am mostly inspired by the fact that you never knew about this condition, but now you know. I am hoping that more people who have never heard of it too, may be informed through this story.

Thank you for the link as well. I'll definititely share my story there too.

May you enjoy the rest of your day!

Jill Langhus
Nov 29, 2018
Nov 29, 2018

You're very welcome, dear:-) Yes, it does!!

Sounds great. Looking forward to seeing it there.

Thanks, and you, too!

Kay Link
Nov 28, 2018
Nov 28, 2018

Thank you for sharing your story with our community. Your strength and courage as a PHighter, writing and design entrepreneur, and health advocate is amazing.

Sakhi
Nov 29, 2018
Nov 29, 2018

I am humbled that you took your time to read my story. It is through people's efforts to actually listen to what PHighters have to say that encourages us to push on in life. Thank you for listening!

Mauwa Brigitte
Nov 29, 2018
Nov 29, 2018

Hi SKI!
I appreciate your brave courage, continue to have the victory.
Thank you to exist!

Sakhi
Nov 29, 2018
Nov 29, 2018

Thank you for the encouragement Mauwa

Mauwa Brigitte
Dec 03, 2018
Dec 03, 2018

Thank you too!

Olutosin
Nov 29, 2018
Nov 29, 2018

Sakhi my sister, I will definitely follow you right away. I love your voice and I am rooting for you, from Nigeria. Such a brave young woman, you are.

Sakhi
Nov 29, 2018
Nov 29, 2018

Wow! Thank you Olutosin. Looking forward to it!

Nov 29, 2018
Nov 29, 2018
This comment has been removed by the commenter or a moderator.
Marie Abanga
Dec 03, 2018
Dec 03, 2018

Dear Sakhi,
What a unique you and a unique story wow wow wow. I am so happy you joined World Pulse which is such a warm community of sisters. You really display how our fractured childhood shouldn't mar our vision and mission in life moving forward.
All the best
in sisterhood
Marie

Vishakha Shirke
Dec 18, 2018
Dec 18, 2018

Dear Sakhi,
love from India for the young PHiter. I can imagine your situation as I had dealt with my father's COPD ( chronic obstructive pulmonary disease) for many years. I hope you will get access to right medical treatment and above all God will grace you with energy and positivism to lead others like you. Please keep writing here and we will wait to hear from you. In India Sakhi means dear friend, so Sakhi please take care of yourself and celebrate life :) Vishakha, Mumbai