Cadasil Support UK Charity registered address 110 Heathmoor Park Road Halifax HX2 9LP Charity Number: 1175812
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Agnes, 38, a civil servant from Sheffield, UK

“It’s fantastic to be able to support others affected by Cadasil”


My dad suffered stroke-like episodes from his early forties. He was misdiagnosed with MS before a doctor suspected it was Cadasil some years later and he tested positive for this.


I suffered depression, anxiety and OCD in my teens. These could have been early Cadasil symptoms. I had a few ‘episodes’ of visual disturbance and numbness during my pregnancy, aged 28. A few years after this I experienced further episodes involving speech issues, numbness in my arm and face, and visual disturbance, followed by migraine headaches.

When I was first diagnosed I felt terrified. I was in a state of what- looking back- was probably shock, for some time. I felt my entire identity and family history had been rewritten and I didn’t know who I was any more. I was terrified I was going to die while my daughter was still a child and felt a huge burden of guilt for putting her at risk of inheriting the faulty gene.

After the shock subsided, I felt low for quite a while and had counselling. I gradually became more philosophical about having Cadasil and, in time, realised I was still me, and that life would carry on despite my test result.  Now, Cadasil is always at the back of my mind (and sometimes at the front!). I try not to dwell on it too much but keep track of any research that’s going on as I am hopeful that a cure or treatment will be found one day- if not for mine then for my daughter’s generation.

I also:

*Follow an anti-inflammatory diet as much as possible. Research has suggested there is a link between Cadasil and inflammation. I have a mainly vegan diet and try to limit salt, sugar and processed foods.

*Take supplements that may be of benefit- folic acid, B vitamins, turmeric tablets.

*Stay hydrated- my symptoms are a lot worse when I’m dehydrated

*Try to make life as simple as possible to reduce stress levels- my symptoms are also worse when I’m stressed

*Accept that some days I will feel rubbish and tired and it’s ok to take it easy on those days

*Rely on the support, and support others affected by Cadasil, in online support groups

  

Other than me and my father, my sister and aunty have also tested positive.

However, much of my family don’t like to talk about Cadasil.  My sister and I are close though, so can be open and honest about how we feel, which is a huge blessing.  


The online (Facebook) support groups are amazing and have been a huge source of support and information. It’s fantastic to be able to support others affected by Cadasil. Our collective voice has led to us making links with the medical community, and contribute to their research.  I work part time to achieve a good work-life balance. I am also lucky to be able to work from home, and work flexible hours. My employer is supportive of employees with health conditions/ disabilities and I’m hopeful that they will make adjustments for me if necessary.

In terms of healthcare, some doctors (usually GPs) have been very kind and understanding (even if they haven’t initially known what Cadasil is). Neurologists tend to have a more clinical approach and I have found them to be a bit cold. I have found that the medical community in general are quite fixed in their view of Cadasil and its symptoms. It is difficult to convince them to take into consideration anecdotal evidence that indicates that Cadasil has many diverse symptoms and appears to be a systemic illness, not just cerebral.


My biggest hope for the future is that my daughter doesn’t have the faulty gene, and that a cure for Cadasil is found.


*Agnes is a pseudonym