Finding the Hughes Syndrome Foundation

During my investigations and research on the Internet, I came upon the HSF website straight away as THE website with all the answers and they had a forum for patients. I joined the forum even before I discussed the possibilities of having the condition with my GP because I just knew that all the symptoms of daily life with Hughes was how I had been feeling since July 2007. I realised that it was also how I had felt during 1996, 1997 and 1998 when I had thought that I was suffering from depression and that my degenerative disc condition was also playing up.

As soon as I entered the forum, I got a really warm welcome from Hazel, one of the moderators. I soon built a really good rapport with the people going on the forum on a daily basis, it was great to speak to people who completely understood my symptoms, how I felt, my frustrations, anxieties and fears.... they had all been there, some of them had horrific stories to tell about losing other halves to Hughes, multiple miscarriages, strokes, heart attacks and pulmonary embolisms. I felt as if my symptoms paled into insignificance compared to some of these people, as I was only experiencing the pain and disorientating symptoms, not the life threatening ones...yet! I was not made to feel like my pain was any the less though, I was welcome to discuss whatever was bothering me and to tell my story.

I found who I think will be a life long friend on the Hughes site, another moderator called Ally who lives just down the road from me in Barnsley. Since speaking on the forum, we have met up, our families have met up, we have talked over the phone and even had a day trip together to the Trafford Centre with a couple of the others from the Forum. There are always outings and meetings going on, they all went down to London for the Hughes Awareness Campaign at the start of June. June is APS Awareness month (it used to be September, but it got moved to coincide with the US one, it made sense).

She has listened to me during my frustrations with work and my husband not understanding me and I have supported her when she had to take early retirement on health grounds from being a District Nurse. Both of us have had to battle because of Hughes, it is that type of condition. It isn't well known, so no-one believes you have a disease, many of the symptoms are invisible - no-one believes how ill you are, it isn't easy to diagnose, tests can come back negative and doctors who don't understand the disease dismiss that you have the condition at all!! The treatment of thinning your blood is not offered generally until you have had a clotting incident - heart attack, PE or stroke, so you live in fear of this happening. Aspirin is advisable, but it may not protect you completely. However, starting to take a blood thinner is a life long commitment, once you start, you have to carry on and it needs checking all the time and the dosage altering depending on your food intake, mood or even time of the month!!! Anti malarials are another treatment - yes, you heard me right, anti-malarials!! They take about 6 months to get working in your system though, they have definitely made a difference to my daily headaches.

Nothing is easy with Hughes - getting a diagnosis, living with it, getting the treatment and living with the treatment....It is very difficult to get your family and loved ones to understand, let alone employers or acquaintances. It is very difficult to describe because no one day is like another. I may have a day which isn't too bad - I may have some pain, some dizziness and feel tired in the afternoon. I may have an awful day, when I just can't get out of bed because I have NO energy, my head is pounding and every bone in my body aches. Most days are somewhere in between. I have already told you about the Lupus symptoms and how I have to be careful in the sun, I also get the Hughes Syndrome symptoms which are the aches, temperatures, my hair falling out and black splinters in my nails. (A good reason to get gel acrylic put on them!). I also get the Sjorgrens Syndrome symptoms and these are dry eyes, dry mouth, chest pains and fluid in my ears. Many of the symptoms cross over for all of these auto-immune conditions. I think the most debilitating is the fatigue though, not just being tired, cannot get up and pick a discarded £20 left on the floor type tired!! - now that is tired, especially in Yorkshire!

They are a fantastic group of people at HSF and in recent months with "stuff" going on, I haven't been able to visit the site as often, although I do get the gossip from Ally on major events. It was the HSF who suggested that I speak to a specialist in Hughes Syndrome and get a referral to see one of the fabulous doctors at London Bridge Hospital. They also insisted that I start taking 75mg soluble aspirin daily to protect me. I got so much support and information from them and was accepted without being judged at all. I thank them enormously and always will.

You will find a link to their site on the right hand side of this blog as a permanent fixture, if you think that you may have Hughes, they will always be there to help and advise.

With all the information from these guys - the professionals, I just needed a quick word with the other professionals, starting with my GP!!