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elizabeth harris

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Everything posted by elizabeth harris

  1. Thank you jensue, for the info, I am vaguely famililiar with the name Carol Black, as many years ago 28 in fact, I was asked to fill out a questionair, but never heard anything from it. she was then doing research into scleroderma and shehas obviously stayed in this field. I will talk to my general practitioner to see what my options are before standing on any consultant toes. Dear Amanda, Thank you so much for taking the time to give me that info, if you read my reply to jensue, you will see that I almost had contact with dame Carol Black, You are so right about my situation coming before the ettiquette thing, i am going to see my general practitioner and if it means a journey to London, roll on, anything is worth a chance at this stage. many thanks. Dear susie, Thank you for the lovely warm and sincere welcome, this site has already lifted my spirits Thank fully, andif in return I can offer any support to other sufferers I am only to willing. Having a supportive family is such a big help and my heart goes out to those wwho are not so fortunate. Thank you Peggy for that lovely response and your kind wishes, so far I am overwhelmed with the members on this site, so kind and so caring, this is as important as medication sometimes more important. many thanks. Dear Judy,Thankyou for your warm welcome and support, as I have said on other replies, I am overwhelmed by the support offered, as you all know only to well, this disease can make you feel so isolated and misunderstood, so thankyou again for taking the time. dear lizzie I see from the time of your reply we share a symptom. not being able to sleep, usually due to pain, Thank goodness for sky t.v and a kettle. Yes will make an appointment for my general practitioner and enquire if there is a way I could just ask at the royal free if they have experience of patients where the disease has oblitterated the arteries and blood vessells, nothing ventured nothing gained. Dear jefa Thank you for those links, i found them both informative and will make enquiries through my general practitioner, what options I can take. Thank you again for taking the time to give the information. many thanks and much love to all, Elizabeth.
  2. Hi Lizzie, forgot tosay, no it wasn't me living in Leeds.
  3. Hello Shennen Before being diagnosed but clearly suffering from symptoms of scleroderma/systemic sclerosis, I got pregnant and at 7 weeks went into hospital for bed rest due to bleeding, my baby kept trying to go into spontaneous labour from 17 weeks, but managed to continue untill 33rd week, result one beautiful boy, now 30 in prime health,Thank goodness, second pregnancy premature birth at 26 weeks, boy, died three days later, but hospital staff saw something in my afterbirth that made them sugest post mortem and reffered me to specialist who diagnosed the disease, told could'nt have more children, but third pregnancy, despite a drug to prevent labour and a suture in neck of womb, baby born 26 weeks, now age 26 beautiful girl in prime health. During each pregnancy I was in a form of remmission and so well it was unbelievable and my children gave me the will to fight on regardless, i never thought I would still be here, so pregnancy is possible but with some complications and no regrets.sorry if it sounds scary. Would'nt have missed it for the world. Elizabeth Harris
  4. Thank you for that Pamela, yes, your right I must be proactive and I will let you know how I get on, many thanks and warm wishes. I will now keep you all in my thoughts, as our faiths are one of the most powerful tools we can call upon when subjected to illness of any sort.
  5. Dear Pamela, Thank you so much for all that fantastic ammount of information,now as I have never been reffered to any of those people, if I contact them will it be going over my specialist rhuematologist at the roayal? I would hate to cause any trouble as I have a good relationship with my specialist, which is so important to me and as the disease is so advanced his motto is (as conservative treatment as possible) but I must confess now to feeling like a ticking bomb, if you understand my meaning. many thanks again for your support in this matter. elizabeth .
  6. Dear Pamela, thank you for that lovely warm welcome, see my reply to Lisa about a sclero expert. many thanks. elizabeth.
  7. dear Lis thank you for that reply, I don't know what a sclero expert is, I am under a rhuematology specialst and a vascular surgeon both at Liverpool Royal hospital and also Dr Kiely at the pulmonary hypertension unit at sheffields, royal Hallamshire hospital, does any of that count as a sclero expert?thank you elizabeth.
  8. I was diagnosed with progressive systemic sclerosis 28 years ago after my 2nd traumatic premature birth (diagnosed from babies post mortem and my afterbirth) I have endured the entire gammit of the course of progression, Raynaud's,loss of finger digits(gangrene), toe ulcers, oesophagus and bowel involvements, heart disease, etc, but I have now got to the stage where I have been told that my arteries and blood vessels to my lower and upper limbs are now so obliterated by the scleroderma and don't have any options left, such as angioplasty. Is there anyone out there with similar problems and does anyone know of any help available? I have regular iloprost infusions, but even they cause dvt's; the last was four years ago and I almost lost my arm. In return I can offer lots of practical tips and solutions to everyday difficulties due to my previous long history and survival spirit dealing with this disease. Many thanks, Elizabeth (Sorry it is so long winded.)
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