A couple of months ago, through my work I was able to attend a workshop for anyone living with a rare disease or anyone caring for someone with a rare disease. The workshop was being carried out to assess alternative therapies in Northern Ireland (NI) and the uptake of them from those who suffer with rare diseases. I went along and was blown away by the conditions and illness that some of those attending had to deal with on a daily basis. It almost made Charlie's Hirschsprung's Disease seem not that bad in comparison.
I was inspired after this workshop to think of our time of diagnosis with Charlie and how alone, isolated and confused we were. I decided to outline my thoughts to Charlie's consultant in a letter and gave it to Irene at one of his most recent review appointments. I felt that if I could do something to help other parents getting the same HD diagnosis going forward it would be worthwhile.
In my letter I suggested that a printed leaflet or link to information about HD would be beneficial. As although the Dr's know everything about HD, as a parent getting a diagnosis of a rare disease you've never heard of is daunting. You nod along, desperately trying to take in all of the information, only for key things to stick in your head. You then promptly forget everything and then panic google the disease. You then get an overload of information about HD and procedures, but some of this information is incorrect, isn't available in NI and it is scary.
My second suggestion was that for parents getting a diagnosis should also be signposted to other support services that could help them. I didn't cope very well when Charlie was diagnosed, I saw the doom and gloom in everything, I wasn't coping with the stress of the unknown and my outlook for Charlie was never a positive one. At first we put it down to being a new exhausted mum and possible baby blues, but after 2-3 weeks of crying at everything and feeling the lowest I've ever felt. I went to the Dr's, they said it was mild post natal depression, but I didn't want to go onto any medication. Instead I spoke more openly to family and Davy and eventually started to come through the fog I'd been trapped in but it took awhile to feel normal and positive about HD and being a new parent.
I honestly know that if I had of been referred to a counselling service or support group, someone impartial to speak to candidly about my feelings of guilt, anger, jealousy and complete incompetence as a mum, I would have been dealing with things a lot better a lot sooner after Charlie's diagnosis.
This then led me onto my third suggestion, a parent support group. When we got the diagnosis, I asked about this from Charlie's consultant and was told there wasn't one. There were Facebook groups but she advised to be wary as they tended to be negative experiences of HD and wouldn't necessarily represent what our HD experience would be. I didn't care, I needed to reach out to other HD parents. Yet, what I found were a lot of HD parents in the US and England and very little from NI.
Charlie's consultant had also been correct in that the majority of posts were questions from desperate parents with concerns for their HD child's bowel output or questions on stomas or different operations and procedures that were not available in NI. I still am a member of these groups and dip in and out, but I thought it would be so beneficial if HD parents in NI could meet up. I stressed that the group would not be to simply discuss the negatives of HD, but to celebrate our HD kids and get to know others in a similar situation.
Recently I got the go ahead from Charlie's consultant to organise the first parent support group, "HD HEROES Hirschsprung's Disease Parent Support Group". I made a flyer (below) and got the approval from the Royal Belfast Hospital for Sick Children (RBHSC). One of the nurses we deal with even printed the flyers and posted them to over 50 families with a child with HD.
I am fully aware that an aspect of the group may lead to talking about the more negative aspects of HD, but I really want it to be uplifting and encouraging. Especially for more recently diagnosed families who like us needed to see how HD kids were still developing normally, living normal lives and thriving. It would have provided us with such hope at a very dark time in our journey as new parents.
I honestly can't wait to meet other HD parents and kids and hope they all look forward to it too. Going forward I'm keen to organise more meetings and a Facebook group for us to be able to ask questions, chat and share things with each other as HD Parents in NI. I would also love to organise a day out at a park or National Trust property for a walk and let the kids be kids and explore and enjoy a day out with other kids going through similar experiences to them. I'll report back on how we got on and fingers crossed it's a success!
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