Dysautonomia South Africa takes pleasure in introducing you to one of its vibrant & powerful voices
A young, courageous lady, & former horse riding instructor, who has a number of ailments / chronic conditions such as Dysautonomia along with a large number of other comorbid, complex, conditions.
As you can gauge by now, when Dysautonomia appears on the scene, it never comes by posing only one challenge. With each organ being affected, the list only increases as time passes.
Ashleigh’s Dysautonomia is not Autoimmune induced. It stems from another rare & rarely known genetic condition, titled: Ehlers Danlos Syndrome – which has 13 subtypes.
In very simple terms Ehlers Danlos Syndrome (EDS) occurs due to malfunction of collagen – when the glue which binds connective tissue & organs, does not do its job – that is “hold bodily tissue / limbs / organs together”… It can result in a VAST range of complex and painful symptoms. It also affects the ANS (Autonomic Nervous System) thus leading to Dysautonomia.
Supplementing with collagen doesn’t help or fix anything, because generally they also have malabsorption issues & other reasons.
There’s a lot more to be covered regarding EDS at another time God-willing. For now I’m “painting you a picture” of the basics so that readers can understand the process of effort from which Ashleigh’s products are hand-crafted.
A few of the comorbid conditions on her lengthy list includes:
– CIPO – Chronic Intestinal Pseudo-Obstruction – a rare gastrointestinal motility disorder
– PHT – Pulmonary Hypertension
– Chiari Malformation – A condition in which brain tissue extends into the spinal canal, present at birth. It occurs when part of the skull is abnormally small or misshapen, pressing on your brain and forcing it downward.
– Congenital Hip Displacer
– Mitral & Tricuspid valve prolapse
Obviously then resulting in anxiety etc.
Below is a glimpse of her daily survival routine – gastric (G-tube) feed set up.
She also has a PICC (Peripherally Inserted Central Catheter) which I explained in the Gastroparesis awareness chapter.
PICC is a line that enters your heart, by means of which medication & certain fluids are administered if all other avenues fail.
Despite the amount of time it involves taking care of herself, she’s able to live beyond the parameters of illness by supporting herself & creating awareness through hand-made products. Recently she launched a little home business titled:
Pashkin & Paddy Projects
A range of accessories to improve patient lifestyle:
– G-Tube funky button covers
– Tubing clips for feeding tubes or nasal cannulas to prevent tangling / tripping over.
– Tubie bears
Apart from the above, her products also include:
– Glycerine soaps scented with pure aromatherapy oils. Not synthetic. The scent is heavenly & it lathers well! Your hands feel clean and fresh. I’ve tried it myself & assure you there’s no greasy residue after cleansing with it.
It has a good PH balance. Can be used on the face & hair as well! Doesn’t trigger a reaction with sensitive skin. Suitable for kids. In fact, they find it fascinating & love to play with it.
These soaps make cute gifts in whichever colors, scents, & shapes you’d like to order 😍😍😍
– Sensory play dough – images & description attached below. Here is the link to her play dough account for more info:
Ideal for kids who fuss to have a hand in kitchen work. The dough contains rooibos. Therapeutic to play with & the scent is heavenly.
I’m an all time aromatherapy fanatic, so no surprise that I’m obsessed with anything related to it. Lol
Who doesn’t like hearts & of course, a glittery turquoise 😍😍😍
Ashleighs journey can be followed on her personal account.
In 2018 she recieved the Rare Diamond warrior award 💎
I adore the authenticity of the manner she documents her journey. No glamorous images or caption. Everything is real as can be, & she has an awesome sense of humor!
(Not stating the prize contents, because what will be left of the “sur-prize” if it has to be shown 👅. Also still awaiting an item to be couriered over so it’ll take some time)
If possible, kindly support Ashleighs home business. Her prices are not outrageous & well affordable 💙
I’m all for supporting local talent, especially home businesses. Based on having my own.. I am fully aware of ALL the effort, time, pain, sweat, tears, & payback that goes into handcrafting products / art…
Please take note: This is not a payed advert. I am not recieving any “cut” for publishing this article. I am spreading the word because she generously volunteered to donate an amount of products without being asked to do so.
After all, it’s part of our humanity to support, assist, & lift each other, with pure intent and no ulterior motive whatsoever.
Raising the motto of Rare Voices:
Stronger together 💙💖💙
Empowering one another is so beautiful
It creates an impact that is powerful!!