Hi everyone, my name is Leanne.
I am 38 and live in Perth, Western Australia
and this is my story.
When I was around 6, I had to have my tonsils out. The procedure went well, but I came out with a bruise on my right chin/cheek area. The Dr. said it was from the tools used to keep my mouth open during the operation and that it would go away. It didn't and I still have the bruise till this day. I'm not sure of the timing, but not long after, I started losing fat from under the bruised area. I started losing it in other areas as well. My whole buttock area is affected, as is the back of my right leg. Again I can't tell you how long this all took. I was too young at the time to remember a lot of it, but I think it all took around 5 years to do. I don't remember any pain and have not had any more loss since it burnt out. The only thing I do remember is the teasing at school that went with it. That and the seemingly endless Drs. we saw. I can remember a lot of my childhood spent in the hospital waiting rooms with Mum. In the early 70's in Perth, I don't think they had ever heard of Parry Rombergs let alone what it was capable of doing. But eventually I was diagnosed.
Once it had burnt itself out, we decided to do the plastic surgery. As with most cases we had to wait until the Rombergs had burnt out and I had stopped growing. I had an absolutely wonderful plastic surgeon who advised us on two different ways I could go. First up was silicone and would only take one operation. The second was a fat graft from my stomach but this would take around 4 months and 4 operations. He had only done this operation once before and couldn't promise anything but said it was my best chance and safer. I thank Mum and Dad for making the decision to go with the second. Even though it was longer, it has lasted all these years with no problems at all.
So at age 15, I went into the hospital.
Step 1:
Was to "pinch" my stomach and to make a "sausage" that contained the fat that would go in my face.
Step 2:
One end of the "sausage" was attached to my left hand.
Step 3:
The other end of the "sausage" was then attached to my neck.
Step 4:
The fat was placed in my face and was held there by stitches.
It took around 4 weeks in between each operation. The Dr. wanted to give the fat a chance to survive the change by keeping blood running through it all the time. He did such a good job that I didn't need to go back until 2 years ago to have it tidied up a bit, as some of it had slipped down a fraction. So it lasted a good 25 years before anything had to be done again. I wasn't allowed out of hospital for that whole 4 months and would not have survived if it hadn't been for my wonderful parents and sister. I have since been told that nowadays it can be done in a matter of hours, medicine sure has come a long way since then.
In between that time I met my wonderful husband, Nigel and had two beautiful boys. Something that, when I was in school, I never ever thought would happen. I feel I have been blessed, I haven't had a really bad case of Rombergs. I don't suffer from seizures. I do get the odd migraine and I am always tired. That's what annoys me most, I hate being tired. I have always said my hobby is sleeping. In the last couple of years my left leg has gone numb and I have to wear a leg brace to walk. Again I have stumped the doctors here, as they are not sure why it is doing that. Is it the Rombergs? They really don't know. But I will continue to see the specialist in the hope they can find something.
In closing I would like to thank my two very very special parents for all their love and support over the years. To my wonderful sister Michelle, thanks little sis for your ears and shoulder. To Angie, even though we have never met, you are like a sister to me and I thank you for listening when I have needed to vent. To Nigel for loving me as I am, it takes a special man to do that. To Jamie and Mitchell, my very special miracles. And finally to my Dr. who gave me the ability to walk with my head held high.
I was once told there were only 3 people in the world with Rombergs, little did I know. The Connection is a wonderful gift to us all, may it continue on forever helping people. Thank you for reading my story and I hope in some small way it has helped. None of us need to be alone.
Love,
Leanne
The final result
Feel free to leave a message for Leanne at rombergs@hotmail.com