Sticky Blood-Hughes Syndrome Support
8,353 members8,528 posts

Hello,not blogged for a while! and WELCOME any new members from over the last few weeks!

Hi - just a quick one to say hello, not written much for a while. and this partly to report progress made. I have been very busy with both my children being very unwell, My daughter and her Lupus and suspected Hughes having endless seizure type episodes, and severe fatigue, driving her back to bed, and my young son, similar, so all the teaching of them at home, when too ill for school. They both live with a chronic daily migraine, which is so severe in my son at times, he can't even get out of bed. I have to liaise with school daily to dot the various 'i's and keep thing smooth running and uplifted for the family.

Some progress there with more help from the school, and the local GP's and hospital being brilliant. I also had the misfortune to react twice to antibiotics, triggering head to toe psoriarisis and joint swelling.. for treatment for real flu and two chest infections, (yawn and snore) etc. This followed on from my son having flu and a chest infection, after which he went down with a dose of cellulitis. Our local paediatrician is now very up on Hughes and Lupus and bends over backwards to help us. I was also delighted as our much liked GP retired, who I fought for months in my area to be allowed to have...retired having quite obviously tidied up all our notes - which became apparent on my son's latest admission to hospital.. having gone to the surgery to collect paperwork as we dashed off for him to be admitted..I read what had been written by new doctor on the way to hospital.

There was not a single detail missing about Hughes syndrome, Systemic lupus, and my other three conditions - other medical detail regarding other family members added in etc. Compared to how we were standing institutionally wise 6 years ago...this is like being on another planet!

Meanwhile I am on a new treatment called LDN.. this is my own experiment, under a GP in Glasgow, as I am one of the unlucky people not suited to Plaquenil, I had a serious reaction, however it suits my young daughter beautifully. It appears to be suiting me and calming some things down, as being only on aspirin twice a day.. there are no drug implications for myself as there perhaps would be for others.

I am hoping with the spring on the way, that we will all pep up and plan some exciting adventures. I hope everybody is as happy and as well as they can be.

So a big welcome to any new people, and a hello to everybody else.

Mary F x

8 Replies

Hi Mary,

So good to hear your experiences with the medical profession is improving, after the challenges you've had with them, it's great news! Love n gentle hugs to the children, it's devastating when our children suffer too, just wish could take it all away!!

I hope the drug trial helps and you get some benefit from it! You're a strong, strong lady and although I wish we all didn't have these autoimmune conditions, I'm very glad and inspired to know you!!!

I echo your big welcome to our new members!! :-)

Take care gentle hugs love Sheena xxxxx :-) :-) :-)


The same applies to you with BELLS ON!

Mary F x


Hi Mary! I'm so sorry your children are ill. I'm glad you are capable of tutoring them and that the school accommodates that arrangement. I was tutored at home much of my elementary years and 3 of my high school years. I lived so close to the school, the teachers came to my house. I honestly feel I received a superior one- on- one schooling. Many of my bosses noticed a profound difference in my education later in life. I was a very independent learner. What we all thought was a terrible misfortune turned out to be very beneficial to me!

It's so hard to keep a family happy when they are so ill they cannot get out of bed and try to take care of yourself as well. Applause for the Lady! Well-done. Teacher, dietician, nurse, EMT, talk therapist and humorist, you have my total admiration and respect. It is one hard job to perform daily with very little complaint - and you still make time for this forum and welcome all the newbies with the same warm and loving arms you take care of your family with. And like any great mom, when someone needs a little "kick in the pants" you manage to do it so nicely that a person is not quite sure you did it at all. Thanks so much for all of your time and work, Mary. When I think of all you do, including taking care of your own symptoms, it shows me it can be done, so I can try a little harder.

Thanks, Mary.



Cheers to you, to! Mary F x


I wish there was a "like" button on here!!


Ah, thanks. Mary F x


Mary, God bless you and your children. What a wonderful lady you are. I hope all of you are feeling better soon...Teresa


Thanks, onwards and upwards as they say! Mary F x


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