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Help Heal Ashleigh

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Darren botha


Fibromuscular Dysplasia (FMD) is listed a rare disease, but recently doctors are calling a misdiagnosed disease. FMD causes abnormal cell development in the walls of one or more arteries in the body. The cells inside the artery continue growing; causing the artery to narrow, and in Ashleigh's case, to almost close, which is called stenosis. This narrowing decreases the blood flow through the artery, and causes damage to the organs fed by that artery. Most people with FMD do not have any symptoms or signs, which makes them at a very high risk of a stroke or an aneurysm.

FMD is usually found in the renal arteries that supply the kidneys with blood. The second most common artery affected is the carotid artery, which is in the neck and supplies the brain with blood. Stenosis of this artery causes severe headaches, ringing in the ears and dizziness. FMD also affects the arteries in the abdomen supplying the liver, spleen and intestines. This causes weight loss, abdominal pain and burning, especially after eating. Stenosis of the arteries to the legs and arms causes limb discomfort with walking or using your arms, cold limbs, weakness, numbness and pain, or sudden loss of use of the legs.

There are two types of FMD. The more common form is medial fibroplasias, which looks like a “string of beads” in the affected artery. Unfortunately, Ashleigh has the smooth type, intimal fibroplasias, which causes her arteries to grow closed with a long smooth narrowing, which is extremely aggressive and progressive. Doctors do not yet know what causes Fibromuscular Dysplasia. Each sufferer has it in their very own individual way, like their own fingerprint. In the U.S.A. they are currently compiling a data base of FMD sufferers throughout the world, to assist with treatment.

There is no cure for FMD and doctors cannot prevent it from spreading. Sufferers of FMD look perfectly healthy on the outside, but continuously feel ill, and their body is like a train smash on the inside. When she was 12, Ashleigh was diagnosed with extremely high blood pressure, which extremely high doses of medication could not control. After 3 years of continual tests and examinations, we were fortunate that Ashleigh's FMD was diagnosed.

Ashleigh is under a Specialist Physician, Cardiologist and Neurologist, in Port Elizabeth, who all consult with a vascular surgeon in Cape Town. Ashleigh travels to Cape Town every 3 months, to consult with her vascular surgeon and spinal surgeon, who then forward the results of tests to her doctors at the Cleveland Clinic, Ohio in the USA.

Ashleigh has had numerous angiograms and angioplasties to her renal arteries, which do not help for long. Her left renal artery was 80% closed and the right one 90%. In October 2008 her cardiologist inserted a self medicating, 4mm stent the length of her right renal artery and her blood pressure normalized for 3 months. It took 2 1/2 months for her to recover after this as her body had functioned with a high blood pressure her whole life, and now needed to adjust to a normal blood pressure. Ashleigh suffers from constant severe headaches as well as migraines and also has difficulty eating and drinking and suffers from severe pains and burning in her abdomen. This is due to the Intimal Fibromuscular Dysplasia which has spread to her mesenteric and carotid arteries.

In January 2009, Ashleigh's blood pressure suddenly rose again. A 24 hour blood pressure monitor showed an average of 160/100, with a high of 220/160. She had 4 kidney function tests at nuclear medicine, and another angiogram. Ashleigh had gaps of 3 to 4 months after successful angioplasty of her arteries, before developing aggressive stenosis again, and becoming ill, which affects our family life, her brother and sister and her own life, and education, dramatically.

The correct treatment of FMD varies with each individual and their severity of the disease, as well as which arteries are affected. If not treated and managed correctly FMD can cause major complications. As Ashleigh is so young and suffers from the extremely rare Intimal Fibromuscular Dysplasia, which is exceptionally aggressive and progressive her South African doctors agreed that she should be taken to America as soon as possible for specialized treatment and to enable her to live a better life. It was decided that she should go to the Cleveland Clinic in Ohio, USA, which has the best knowledge of Intimal FMD, as there was little else that could be done for her here.

In addition to her Intimal FMD, Ashleigh also has a spinal condition called Spondylolithosis which has caused her spine to become unstable at the base and to curve 39 degrees off centre, making her hips, shoulders and the rest of her body skew. Ashleigh is under a spinal Profession in Cape Town, who she visits regularly, and there is a high possibility that she will need an operation in the future to have a steel rod inserted in her vertebra the full length of the spine, with a metal plate and screws to enable correction as her condition worsens. Spondylolithosis is when vertebra slip forward, causing the spinal joints to degenerate and encroach upon the spinal canal, inside the spinal column, resulting in spinal stenosis.

Ashleigh suffers severe pain in her lower back, muscle spasms, thigh and leg pains, and weakness. During the acute pain phase, bed rest is needed for a few days. Activities are limited and she is unable to play sport to prevent stress to the lumbar spine. Ashleigh is unable to take any pain medication or anti-inflammatories for this condition due to her Intimal FMD. She has also lost feeling in her hands and cannot feel heat or cold, so often gets burnt.

Ashleigh was a very active hockey player, athlete and swimmer as well as playing the saxophone in her school band and her dad’s band, but is no longer able to do any of this.
She did a lot of photographic and ramp modeling, and had been head hunted for international modeling as soon as she was old enough, but has no energy and often feels sick and very tired to pursue her modeling as she would like to.

With the help of exceptional people we managed to fundraise R370 000 to take Ashleigh to Cleveland and cover the tests and treatment that she needed. Our Medical Aid would not pay for the treatment needed there as she cannot be cured. They would only refund us the South African cost of tests done in the USA, which could also be performed her.

Ashleigh and her mom travelled to Cleveland in June 2009, expecting to be there for 12 days of intensive testing and then to return home with a treatment plan. The very experienced group of doctors there were shocked at the aggressiveness of Ashleigh’s disease and stated they had never seen such a severe case of Intimal FMD in such a young person, which was so widely spread in her body. They performed a 3 hour angiogram and arteriogram on Ashleigh and found that the stent had stenosed and her mesenteric and carotid arteries were also affected. It was also discovered that Ashleigh suffers from a connective tissue disorder.

The doctors were unable to open Ashleigh’s right renal and told us she needed a bypass operation as soon as possible to prevent further damage to her kidney and other organs that were being affected by her extremely high blood pressure. We were not allowed to return home to raise more money as it had to be done immediately. The operation took 9 hours, and the surgeons spent the first 2 hours searching for an artery in her body to be used for the bypass, but they are all affected by FMD. They could not use a donor or artificial artery due to the aggressiveness of her disease, her age and the way her body had even rejected the stent, which had been bent at a right angle. The surgeons used a vein from Ashleigh’s leg to bypass from the aorta to the right kidney which has 15% function left. We had to remain there for 9 weeks for Ashleigh to be closely monitored and during this time she developed a thrombosis in her leg, where the vein had been removed, and had to inject herself for the next 6 weeks twice a day.

It has recently been discovered that Ashleigh’s digestive organs have slipped down into her pelvic area causing her stomach to rest on her bladder, her colon to be stretched out and hang down into her legs. The human bodies digestive system is made to work upwards, and is unable to function normally downwards. Ashleigh has to be extremely careful of what she eats and suffers a lot of discomfort from this.

Due to this unexpected cost we are deeply in debt which needs to be paid back urgently so that we can start saving for her next visit to Cleveland, which ideally should be in July 2011, a year after her bypass.



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