Birth Hogg dube syndrome.

[molly1969]

Just to add yet another problem just been diagnosed with birthday Hogg dube Syndrome. Sister worried as hereditary she has same spots. It affects kidneys and liver too. On top of the Hughes I just feel a freak

[molly1969]

Sorry typos birthday hogg dube

[molly1969]

Will not let me do what I want to say!! Getting frustrated BIRT HOGG DUBE thank goodness.

[Lure2]

Hi Molly,

You know we are no doctors here but I must say I have never heard of it when reading about APS.

I read that you have started Riveroxaban one month ago. If you feel ok I suppose you must not worry about it but talk to your APS-doctor if he has diagnosed you with it.

If you are worried phone the clinic next week.

Best wishes from Kerstin in Stockholm

[molly1969 in reply to Lure2]

Thanks lure wasn't asking for a medical opinion just adding that as well as ape have another syndrome. I see enough specialists. And yes not had any problems on riveroxoban so far. Both syndromes are unrelated I think? Just a comment passed on to others x

[Jooolz]

Hi Molly I know that freaky feeling! Along with probable Hughes, I have EDS3, PoTS , Mast Cell Activation Syndrome, lichen sclerosis, an immune deficiency, a probable auto inflammatory disease and a few other lesser conditions. It's difficult dealing with one issue let alone more....and the implications it has for your life. I try not to get down as this really does impact my health. I hope you can find a way of coming to terms with the conditions and dealing with these illnesses in your own way. I also carry the view with me that there is no such thing as normal! That makes feeling like a freak a bit easier to deal with. Julie

[molly1969 in reply to Jooolz]

Poor you I have deep sympathies for you. It's sounds worse than mine. I just frustrated that this aps comes with a whole package of crap!! Boss keeps saying I'm grey to look at lost so much weight look unhealthy!! Frustrated. X

[SuzanneJ]

Dear Molly, I have never heard of your condition either so thank you for highlighting it to us. That's how we learn about new conditions - by talking to each other on here. Please don't feel a freak. I do know what you mean though.

I am lucky to have a very good gp. I said to her I feel a nuisance as I have so many health problems. I have APS, Scoliosis so I have metal rods and wire in my back, I have arthritis in my joints, bone spurs on my hips, I have had a total knee replacement, I have an under active thyroid. I said to my gp I am a nuisance with all my health problems and she said 'you are not a nuisance Suzanne - you are a challenge!'

My gp likes a challenge - bless her!

So please keep us updated Molly and let us know how you are. The lovely people on here have got me through some tough times when I have felt low when yet another health problem has popped up.......and we don't want to hear you using the f word (freak) on here again either! You are interesting! After all, we have learned about a new condition through you!

Best wishes from Suzanne xx

[molly1969 in reply to SuzanneJ]

Aww thanks and my conditions are not serious well not yet anyway. Will have to get lungs and kidneys checked more often but never away from a go or hospital for long. Get a free face peel with birt Hogg dube. Don't get anything nice with aps ha ha. More worried about my sister as its hereditary. I wondered if aps was too? People are not checked for antiphosphoilipid unless we have clots or strokes?

[GinaD]

One does not inherit a specific autoimmune disease; but the tendency to acquire autoimmunity is genetic. Whether and which autoimmune disease a susceptible person gets depends on environmental factors. Which factors those may be are up for debate, but based on data it looks like mononucleosis a.k.a. glandular fever is one of those factors for developing APS.

[mozelle in reply to GinaD]

hi Gina

You just wrote something very interesting. I was diagnosed with APS and factor V Leiden a year and a half ago as I've written about it on this forum after a history of DVT several times.

the factor V was inherited and I know that the APS is acquired. you mentioned mononucleosis. 40 years ago I had mononucleosis. I never knew that there was a connection with the two. I am going to mention this to my hematologist next time I see him.

[Hughes-Comrade in reply to GinaD]

Interesting Gina, I just had mono recently too.

[molly1969]

We don't know if we have aps unless it's too late birt Hogg dune is inherited. My mum had it aunt has it sister has it. I now have someone who specialises in genetics. My mum had kidney cancer and docs didn't know why. It's crazy what we inherit but sister worried she passed it to her 3 babies!! X

[MaryF Administrator]

Join the club on here we all seem to have loads of overlapping conditions. I have a fair few now.... hence my purple hair! MaryF