"A" is one of my lovely clients who came to me with a request that was a little out of the box. She has a rare condition which necessitates constant compression (her story is below).
Despite the pain and hardship she faces, she always has a smile and a strength that I truly admire.
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I would like to thank Maddica Morris from Delicate Façade Corsetry for her incredible work designing and making a complex medical corset for me. This is my story, and the story of the corset Maddica designed.
I have two rare medical conditions, one of which is an autoimmune disease where my immune system ‘mistakes’ my normal healthy tissues as foreign and destroys them like it would germs, viruses or bacteria. So far it has destroyed my thyroid and adrenal glands, and is now destroying my joints, tendons and connective tissue (the normal tissues that connect, support and separate organs and other tissues in the body).
One of the outcomes of this has been lymphoedema. The normal lymphatic fluid that circulates in the body in vessels like tiny veins is now ‘leaking’ into the surrounding tissue across the majority of my body, from my toes up to my bust and arms. I began to swell rapidly and increased from a size 16/18 up to a size 30 over several months, my body was like a huge round balloon ready to bust, I couldn’t bend my joints very well or move much, and I became housebound.
Once finally diagnosed, I underwent multiple intensive treatments, hospitalisations, infusions and medications and was prescribed medical compression garments from my toes to my bust, to be worn 23 hours a day forever, initially to reduce the swelling and eventually to stop it swelling again as my damaged connective tissue cannot do its job.
My legs initially, then my entire torso were bandaged in multiple layers of bulky compression bandages over wool and foam wadding, 23 hours a day in the hot Queensland summer.
As the swelling in my legs reduced from the compression and treatment, commercially available adjustable lymphoedema compression wraps at night and compression stockings during the day replaced the bandages, but the options available for the torso from groin to underbust area were very limited, as it is rare to have lymphoedema across this entire area and even rarer to have my combination of medical conditions. The practical problem in finding suitable garments is that as the lymphoedema reduces, the body size changes – the options are to either use hot multiple layers of compression bandages; buy medical grade strong compression garments in progressively smaller sizes every few weeks (an extremely expensive option I couldn’t afford); or have a medical corset custom made. I had a commercially available but painful, ill-fitting garment that adjusted with straps from my groin to my waist, but the steel strips dug into the top of my legs creating severe bruising. Above this garment were multiple layers of hot compression bandages from my waist to my armpits that invariably slipped and hung down leaving a trail of bandages dangling behind me. While this was slowly reducing the lymphoedema, it was not a nice option – I got very little sleep, overheated constantly and it was painful, 23 hours a day. I was desperate for a better solution – I did not want this to be how I spent the rest of my life.
Then Maddica came to my rescue! I found details on an international website of the amazing work she did making a surgical corset for Sasha, so I tentatively approached her with my unusual request. To my great joy, Maddica agreed to help me, came to see me 4 days later and started working on ideas immediately! But the task was huge and complex - she had to take into account the direction of lymphatic flow, graduate the compression to meet the prescribed levels from the waist up to the lymph nodes under the arms and from the waist down to lymph nodes in the groin, have the edges finish just before the lymph nodes with no compression, and the front of the corset had to avoid catching on the top of the leg compression garments.
It had to come high up the back so the compression bra could go over the top of it, which would stop the bra band creating a barrier that would stop lymph flow.
She had to design the underarm area to transition from the high back to the underbust at the front, but avoid coming near the arteriovenous fistula in my upper inner arm – it is a vein and an artery that were joined together to use for infusions after two port-a-caths (implanted venous access devices) failed due to blood poisoning. It is a huge vein 8cm in circumstance and it sticks out all the way up my left upper arm and into my armpit, and cannot have any compression or be knocked or rubbed by the corset. And most of all, she had to design something that was strong enough to compress a round balloon shaped body into a normal(ish) shaped body by multiple small adjustments as different areas reduced in size as the lymphoedema reduced over time. And try to make it so I could move, sit and lie down, and not be hot!
Sounds like an impossible task. But Maddica was incredible. She designed and made a wonderful mesh corset that did all this and is amazingly comfortable. It underwent multiple changes in size from initial design to now, as the lymphoedema reduced, and the result is excellent - wearing it I can now walk, sit and move around with ease, sleep restfully, I feel confident in leaving the house, and it is working perfectly. The most extraordinary design element is that it has 3 sets of laces running the entire length of the corset from top to bottom (it had 5 sets at the start), plus a wide busk, which allows for multiple independent adjustments and graduated compression levels across the entire corset. I am just astonished at what Maddica has been able to do – it is an incredible job, designed to cater for all my unusual needs. And on top of all that, she has also agreed to make me a second corset later - once all the lymphoedema is gone and I am back to a size 16/18 with a more normal shape (which is when this corset is closed) she will make a new less complex corset that will stop the swelling from returning. At that time the compression required will change from the corset 23 hours a day to 12 hours a day, with a medical grade elastic compression garment for the other 12 hours a day, and will likely stay at that from then on.
An important issue for me in approaching Maddica was that I was very embarrassed and anxious about my condition and how I looked, I was in pain and couldn’t move very much, I had no previous experience of corsets (I had never even seen a real one before), and I came to Maddica desperate and with a virtually impossible request – create a corset to turn what was by then a size 28 round balloon into a size 16/18 body! But Maddica was amazing – she immediately put me at ease, and was very caring, helpful, reassuring and supportive. She is extremely inventive and her skills are incredible – she designed and made the perfect corset for me. I cannot thank her enough. She has given me back my independence and dignity, improved my quality of life 1,000 fold and enabled me to reverse the progression of this dreadful condition.
Thank you Maddica! I will be forever grateful.
A
I have attached pictures of the corset Maddica created, as it is now. It is 34cm high at the front and 46cm high at the back and is closed to about a size 22 in these pictures.
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