Help for my daughter
My daughter has recently been diagnosed with colitis and previously with hydradentis supperitiva ( spelling may be wrong) does anyone know if there is a link,I have been diagnosed many years ago with lupus and hughes, just wondering if it could be autoimmune related
Hi, there us a known link with colitis and APS, my mother had crohn's so I am tested all the time. Fortunately clear.
They do say it's quite common to have more than one autoimmune disease, I have primary APS and sjogrens.
I found this interesting paper on HS, I hope your daughter gets some release from it soon.
Oh and forgot to say a brilliant charity full of help is Crohn's and colitis uk - they have a 24/7 nurses helpline and doing a lot of research.
Hi, autoimmune diseases do run in families, I hope she has a good dermatologist for her skin condition. There are many on here who have a gut problem alongside Hughes Syndrome/APS either due to sticky blood causing problems including with digestion due to the poor blood blood flow and also diseases and inflammatory gut and bowel diseases. Most have a problem with gluten which can make things a whole lot worse. It is important that she is kept an eye on regarding Hughes Syndrome/APS with blood tests, and also that her GP is aware of the family history so she does not get prescribed a contraceptive pill. It is important to check levels of vitamin D, B12, Folate Ferritin and a Thyroid panel. I enclose a paper for you.
ncbi.nlm.nih.gov/pubmed/297....
Please do discuss with your GP before adding in any supplements. MaryF
Our son ( now 18) was diagnosed with APS antibodies at age 16.
He was diagnosed with ulcerative colitis in kindergarten. ( his Pedi gastro enrolled him in a clinical trial for azacol for Pedi use.)
Our daughter ( 28) has early / low lupus ( with low c3, low c4, and low total complements) but negative for APS or the actual dsDNA or Anti smith or RO antibodies. She has been started on plaquinil.
She is presenting with Raynauds, Livedo, headaches , nausea, and mouth and nose ulcers.
She has been diagnosed with degenerative disc disease, with bulging discs in cervical spine. Nerve conduction studies confirmed nerve damage to arms. From compression. ( she’s tiny- she weighs 115 pounds.)
She was sent to gastro for nausea, and was seen this week. Celiacs is strongly suspected. A colonoscopy has been ordered.
Could you let me kn ow any diar tips please and thank you xx
BRIDGING MY BLOOD THINNER FOR COLONOSCOPY
Help! Headaches ruining my life
Update on my appointment for my hand etc
daughter and hughes
Is it worth asking our GP to test our daughter for Hughes syndrome (aka anti-phospholipid syndrome)?
