Is this something you have encountered?

[Sasa32]

Hello all,

Well to cut a long story short my daughter has a primary lymphodema with vascular malformation/pick3ca related overgrowth in her right foot. Around five years or so ago (possibly longer the days role into months, months into years..) she started getting these blood blisters (the best I can describe them), fast forward to now and her foot is covered In them. These blisters pop and bleed quite alot, the local consultant dermatologist tried to lazer them,however it was very painful for my daughter and the blisters grew back. In the last year she has been admitted to hospital 6 times with celulitis. With the weeping blisters being thought to be the source of infection. The great team at St George's (Dr Christina Gordon)had recommended the next time she presents with celulitis that 6 weeks of iv would be beneficial (hopefully my local hospital will take this on board). So know I'm getting to the point, I wondered if anyone else had experienced these blisters and if or how it was controlled. Thanks for listening I look forward to your replit's

[Lynora]

Hi Sasa32 - the condition your daughter has is so rare I had to get out my lymph reference books! How old is your daughter? Has the VM caused Lymphoedema in the whole limb or is it confined to the foot? Is she attending St George's regularly? Have the team been able to liaise with international hospitals about her treatment? Have you been in touch with the LSN? There is childrens lymphoedema group - there may be members there who know something about this.

[Sasa32 in reply to Lynora]

Hi

She is 20, we live in Manchester so the visits to St George's are just annually. No she was born with it, the diagnoses she was given was m-mctc with a primary lymphodema. It wasn't until she was 18 they found the pick3ca gene. It is just confined to her right foot. She has not seen any other doctors although her dermatologist has just referred her to a genetic doctor at St Mary's. Previously she was a partipant for sirolimus at Cambridge hospital unfortunately due to amount of infections she wasn't able to continue, the doc at St Mary's is supposed to be also doing research on pick3ca aswell so we shall see.

[Lynora in reply to Sasa32]

Is she under the care of the Christie Hospital lymphoedema clinic?

[veriterc]

Do you have this service yet in your area?

aftercancers.com/2017/02/my...

I find them very helpful with shortcutting bureaucracy, red tape, etc.

If you don't have this, I am afraid you have fallen foul of latest NHS regs. and have to INSIST that your GP refers you back urgently to your Lymphoedema clinic.

Good luck!

[Lynne-byn]

Hi Sasa, I'm new to all this but I've saw Lynora & others replies. I have blood spots (like a mole only bright red), no idea why they appear & don't bother me. I feel for your daughter sounds like she has been thru the mill. Would she join here as well? Lovely group off people not much they don't know. Goodluck to you & your daughter hope she's gets sorted x