Is there any community which can help me?

Hi everyone. I'm new here and I know that this website is for sharing experiences and feelings about life with visible differences. But I'm really desperate to look for help anywhere. It's a big problem to find help because I'm not from UK, I'm from Poland. I am 23 and I have Sturge-Weber Syndrome with facial asymmetry and glaucoma in the left eye. I had written an e-mail to charity in UK which helps people with Sturge-Weber Syndrome. I asked Them for help in finding specialist (who would be able to correct my facial asymmetry) or another charity. They advised me to contact ChangingFaces.org.uk, but it's also organisation for people from UK. My question is: Where should I look for help? I don't know what to do. I can't find help in my country.

[younique]

Hi Hidden , welcome to the forum! I'm sorry to hear you're having trouble finding treatment for your condition. Have you received treatment in the past? Are there treatments you could have done (for example, nose reconstruction or eyebrow lift) that aren't specific to Sturge-Weber Syndrome? What I mean is, could you find a general plastic surgeon who could help you with asymmetry? Or do they need to be a specialist? Sorry I don't know. I can try to help you do online searches but I don't know of any organizations myself.

[Hidden in reply to younique]

Thank You for Your reply, younique. I was diagnosed with type I of Sturge-Weber Syndrome with glaucoma in the left eye. My port-wine stains are located on the face, especially on the left side and on the head. In 2010-2015 I had laser treatment. It was refunded by National Health Fund because of my minority. Despite a big number of procedures, the results were not acceptable enough. After becoming an adult, the refund has ended and the next treatments would be paid by myself. Due to my parent’s mean wages and my future studies, I did not want to spend their money on this and I resigned from the continuation of laser treatment. Now there is more advanced laser in my country in private plastic surgery clinics, but that's smaller problem than my asymmetry. And about the asymmetry: the left cheek and the eyelid are bigger than the right ones and the left corner of my mouth is dropped. I am afraid I will not find a specialist in my country, who would be able to operate on me. When I was 8 I had problem to find a dentist who could take out my teeth. Everyone was afraid because of bleeding and I had to have a surgery under general anesthesia and the blood ready to transfusion. There are surgeons for example in USA, but the first problem is to contact them and get there and the second problem is money. That's why I wanted to contact a charity which specialises in facial asymmetry or Sturge-Weber Syndrome or in both. My syndrome needs to be treated in interdisciplinary way (I found this information looking for surgeons). I don't want to get money from them, but I want to get help and advice, guidance how I can cope with this.

[younique in reply to Hidden]

I understand. It's hard navigating treatment on our own; it can be very overwhelming, and it is so helpful to get direction from specialists who have professional and medical knowledge of our conditions. The emotional support is just one aspect of improving our quality of lives when living with a visible difference. We are here for you, if ever you want to express how you're feeling or simply to connect. I'll try to look up some resources for you but hopefully someone else on the forum can help more.

[Hidden]

Hello Hidden , thanks for your post. I'm really sorry to hear how difficult it has been for you to find treatment for your condition. I'm afraid that Changing Faces is not a medical organisation and so we don't provide treatment or are able to provide further information on this. I do hope you're able to find the help you're looking for and as has been mentioned already you're welcome to use this space to share how you're feeling and connect with others on here.

Take care,

Tiffany