21 March 2010


I am very excited because a friend of the family featured in this story that I linked to last week contacted me on Facebook telling me about the family, and I have now written to the Oldacres.

Jack is 19 months and has Netherton's Syndrome like me.

I really hope they write back so I can give them some advice and share stories.

Little Jack is very cute.

Also, I had a really positive comment on this entry from a guy called CanaTukker in Canada. He told me he used to be married to a woman with ichthyosis. He looked beyond her condition and loved her.

He wrote, 'My parents always told me growing up, "op elke potje, past een dekseltje". Loosely translated it means, "for every pot, there is a lid that fits." I believe the same will be for you'.

I am not sure if this will be the case but I remain hopeful.

It has been good to receive a comment from CanaTukker - not that the other comments weren't supportive and kind - but I felt it difficult reading encouraging comments that were more about me focusing on not having a boyfriend, rather than my experiences of rejection. Rejection and questions about my appearance are real for me, and I believe that while it is easy to suggest I put myself out there in the dating scene, many people may never have had to justify their appearance to someone.

I really hope this post didn't come across as negative or critical to those who did comment. As you know, I appreciate all of your comments, but I wanted to have the chance to respond.


  1. Hi C, Rejection based on physical appearance is very difficult and trying and everyone who reads your blog probably feels as I do- that you are incredibly brave and maintain a positive outlook despite having serious health issues to deal with. Stay strong.

  2. Oh and another thing- you are a true survivor. But you know that C.

  3. IF you are single and have been for awhile I think it can be very hard to hear people telling you to "be patient" etc. Saying 'someone will come along' is such an empty phrase as none of us can promise or guarantee that happening which is what makes the whole situation frustrating. Giving three valentines? very courageous... I would never have the guts to do that :)

  4. I love the saying from your lovely Canadian reader - it is beautiful :) I'm a believer and I hope that it will not be too long before someone special finds you. *hugs*

  5. Stay positive carly. You will only receive from people that, which you expect of them. You are brave, and beautiful!


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