Unpleasant pop-up

Many of you will have probably noticed the unpleasant and annoying pop-up on the blog…….

Unfortunately, I had to add a widget to the blog for this pop-up to be shown on all pages since EU legislation (concerning cookies) requires me to do so.

I am really sorry, but the alternative was to close out the blog, because for those who do not comply high penalties apply.

But this was not an option since I think it can be useful to many people.

We will have to live with it, then!

First psychological issues

When did your little ones start feeling uncomfortable with their feet/hands?

Two weeks ago, we were having lunch and suddenly my daughter asked me: “Am I not wearing socks at my gym recital?”ūüė¶

“Of course, you won’t. All the children are supposed to be barefoot” – I answered without even thinking.

But soon after I understood what the point was…..

She was feeling uneasy about her foot (the first time ever!).

So I asked: “Are you ashamed about your special toes? Your friends have already seen them during the swimming class. Haven’t they? What’s the problem, then? If you have changed your mind about surgery, please, tell us, we will find a solution together.”

But surgery is not a point yet. She does not want to be told about it. She refuses it with all her strength.

What am I supposed to do? Shall I instist or let it go?

What was your experience (for those who postponed surgery) to this regard?

Our follow-up yesterday

dear all,

yesterday we had our follow-up appointment after 2 years. My daughter is now 6 years and a half.

The situation is fairly unchanged.

In March 2013 we noticed an increase in the length difference between the 2nd digits (the normal and the macrodactyly one; from 0.5 to 1 cm) as compared to the previous measurement of 2011; in February 2014 a new increase (0.5 cm) but in both digits (so this is good news) and no changes since then. We changed shoe size since February and this means that this was due to the other parts of the foot (and NOT the macrodactyly toes) having grown. The 3rd digit is unchanged since 2011.

Given the above situation and the fact the we still use shoes with the same size, the doctor suggested that we should continue with the observation strategy. If nothing changes to the worst, he is going to see her at 9 (according to the doctor this is an important stage in female growth).

As far as surgery is concerned, he said that this will have to be done at some time but he hopes we can delay it as much as possible.

By the way, my daughter doesn’t want to hear about surgery yet. She says she is satisfied with her big toes as they are, and does not want “to cut” them…. I think she will change her mind as she grows up…. time will tell. In the meanwhile we can only wait and try to gather as much information as we can.

 

Classification of macrodactyly

According to Orphanet, macrodactyly is classified as follows:

http://www.orpha.net/consor/cgi-bin/Disease_Classif.php?lng=EN&data_id=156&PatId=20971&search=Disease_Classif_Simple&new=1

Unfortunately no summary exists on the disease on Orphanet.

Moreover, I have run a search on the Eurordis database, and no online community exists on this disease. RAREST AMONG THE RARE!

http://www.eurordis.org/content/rare-disease-online-communities

Updated pdf

Dear all,

as promised I have updated the pdf with our Stories:

OUR STORIES. (Last update December, 1st, 2014)

As you’ll see, there are many missing data and many people have been lost to follow up.

For this reason I have decided to write an email to all the people who commented here to know if they have any updates they wish to share.

I will also add an option to stop receiving emails.

Thanks for your support!

Tomorrow our follow-up visit

Hi there! I hope everybody is doing well!! I know, it’s been long since my last post here and once again I have been terribly late in approving new posts.

Tomorrow we are having a¬†follow-up appointment (after two years from the last one). We had an x-ray last month and the situation seems almost unchanged (apart from a couple of new bones in the feet which weren’t present last time). I will let you know what the doctor says…

I will also try to update the table in the our stories section…..

New pdf update

In the OUR STORIES section you will find the newly uploaded pdf.

At first I had thought not to mention the nick names; however, I then realized that this implied a greater difficulty in filling in updates to the stories should they become available. For this reason, if anybody wants me to remove the nick name or the entire row relating to his/her story, do not hesitate to write me. However, you should also remove your comment(s), since they are all still here.

As you will see I have tried to put together people living in the same area, so that maybe you can find someone near you and share your experience privately.

It would be great to have updates on people who wrote in 2011 or even more recently. How are you/your kids doing?

ciao

Fede

Updated pdf

dear all,

this is to let you know that I have just published the first draft of the pdf on the OUR STORIES page.

It contains the stories of people who published them through comments in this blog. I still have to go through the emails that were sent to me personally.

For those who have commented in the past, I would be very happy to know how you are doing now.

I would also like to thank all of you for sharing here. Sorry for not replying to all of your posts. I would have liked to but I would need a 48 hours clock to do everything I would like to…..

 

Apologies

I wanted to tell you all that I am terribly sorry for not approving your comments sooner.
It has been quite a demanding period since the arrival of my second daughter and with my two jobs it’s rather hard to follow everything …..
I also wanted to share with you that I am trying to prepare a table with all the stories posted so far (area/region, body area affected (fingers/toes), family history if available and outcomes (if available). It’s quite a big project and I don’t know how much time it will take me to complete…
However, I think it might be helpful in order to gather info on the disease, since even doctors don’t know the exact prevalence and outcomes data (or don’t want to share these with us…).
With love
Fede

Forum soon deactivated

dear all,
this message is to let you know that the forum linked with this blog will soon be deactivated due to low activity.
I had thought that the forum could be a place where we could to talk to each other and the blog a good place where to find structured pieces of information.
But I see that everybody prefers to post here…
Please, let me know your thoughts.

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