THE FAMILY of a Chafford Hundred woman are appealing for help for their daughter,disabled by a rare disease.
Natasha Silvermen is batting against a rare genetic disease called Ehlers Danlos Syndrome (EDS).
Her sister, Becky has started a Go Fund Me page as they look for help as Natasha needs key surgery in the United States of America to help her.
https://www.gofundme.com/hopefornatasha
Becky has written a detailed decryption of Natasha’s situation and how you all may help.
"Dear Reader,
"My big sister Natasha is a 28 year old from Essex, UK, who is disabled by a rare genetic disease called Ehlers Danlos Syndrome (EDS).
"Over the last few years, Natasha’s health has rapidly declined and she now requires several major neurosurgeries. There are currently no EDS specialist neurosurgeons in the UK that are able to help her. As a family, we are desperately trying to raise funds for her to have the necessary surgeries in the USA with a specialist surgeon. In the hands of a non-EDS specialist, these are extremely dangerous and life-threatening operations. This is her only chance to recover and lead a more normal life.
EDS causes the body to produce defective connective tissue, which is the “glue” that holds the spine, muscles, ligaments, tendons, skin and organs together. This means that EDS can affect the whole body. Natasha’s connective tissue is too fragile and stretchy to provide the structure and support that her body needs to support itself.
Despite heavy medication that leaves her with many unpleasant side effects, Natasha is in pain every second of every day and is mostly bed-bound. She leaves the house once a week at most due to the pain, neurological symptoms, weakness and fatigue she suffers. Her condition has deteriorated so much that she has to use a wheelchair, as she is unable to walk even short distances, and is very reliant on us as a family to do basic things for her that most people take for granted.
Here is a breakdown of just some of Natasha’s EDS symptoms to give you all a clear idea of what she suffers with every day:
– neurological issues such as muscle tremors, severe weakness, numbness and loss of feeling, muscle atrophy, widespread neuropathic pain, paraesthesia
and hyperalgesia
– excruciating and relentless widespread pain leaving her bed-bound
– full and partial dislocations of most of her joints everyday due to her weak connective tissue, and is even unable to turn over in bed without her ribs, hips and SI joints (lower spine) popping out of place;
– intermittent difficulty in breathing, requiring the use of a ventilator;
– problems with swallowing caused by spinal cord compression;
– dysautonomia, where the body loses the ability to control vital, automatic functions like heart rate, blood pressure, breathing, digestion and urination.
This is sadly just the tip of the iceberg of my sister’s symptoms.
Over the last year, Tasha’s condition worsened drastically and by September 2015, she was left with no option but to travel to Maryland, USA, to visit one of the only EDS specialist neurosurgeons in the world. The surgeon confirmed our worst fears, that sadly, due to her EDS, Natasha’s spine has become dangerously unstable, causing her vertebrae to dislocate on movement and compress her spinal cord, affecting the messages sent to her brain – along with many issues. Her ONLY chance of recovery is to undergo several major neurosurgeries. With these operations, Natasha’s surgeon believes there is great hope for her and her future.
Unfortunately, the cost of travel to the US, appointments, the individual surgeries and the hospital care is extremely expensive and we have no way to help Tasha financially on our own. So here I am, asking you all to help us raise funds for life-changing surgery in the USA.
It is absolutely terrifying to watch my sister in agony and deteriorate every day. I can’t imagine how much scarier it must be for her. She tries her hardest to be strong and stoical but she’s suffering constantly. I have absolutely no idea how, but Tasha still manages to be a happy, good-humoured, positive member of our family.
I am so proud that Tasha somehow managed to achieve a First Class Honours Degree in Law this year – completing the last two years of her degree from her bed! She was unable to work upright at all due to the pain and neurological symptoms, and I have no idea how she managed to maintain such an amazing work ethic while struggling so severely with her condition for such a long time. She still aspires to be a lawyer, and I hope that surgery will make this possible.
Tasha is so intelligent and so beautiful, and never loses her brilliant sense of humour. I’m incredibly proud to call her my sister, and I truly hope that this can bring her the help she so desperately needs and deserves.
On behalf of my sister and parents, I would ask that, if you feel at all able, you contribute (however small!) a donation to help Natasha. We would be so very grateful for any help whatsoever.
Thank you so much for taking the time to read this.
Natasha’s little sister,
Becky x
