Help for SLE

[Denisa]

Hi! My name is Denisa and I am from Slovakia. I am a young student of Medical laboratory scientist and I am interested in disease of SLE. Now I'm going to work on my final topic for bachelor degree. I would like to do a research about how are the results of people who are hospitalized, compared with the results of people who are already receiving home care. (And In the future, I would be trying to do research for the treatment or reduction in the incidence of SLE.) So my question is that : whether you would be willing to work with me in my work via the Internet. This would be especially about the laboratory results of the comparison of the Slovak Republic and the UK or maybe why is the country's lower incidence of disease.

And finally I am so sorry for my english... with love and desire a nice day Denisa

[whisperit]

Hello Denisa,

Nice to hear from someone in Slovakia!

I think there may be people on this forum who would be willing to help. However, perhaps we need some more information about what/who exactly you are looking for?

For example, are you looking for:

- people with a SLE diagnosis only?

- people who have access to their laboratory results (and which ones)?

- do you have a protocol or description of your study that you can share?

Hope that helps. Good luck with your studies in any case.

[Denisa in reply to whisperit]

Hello again I am very pleased of your answer! My science work will be done maybe from June 2017 to Januar/Februar 2018. I would like to write about how meaning has a determination of autoantibodies against ds-DNA when we diagnose SLE.

When I´ll be a medical laboratory scientis so I must do my work about laboratory diagnosis and about values and so on...

For example: I would also like to compare the value in finding disease and values during treatment - if treatment took, and how greatly influenced by the results of deployed drugs. (or for example: The levels of antibodies to the nucleosomes in patient groups with different value proteinuria..... determine the frequency of Ag / Ab in SLE...). I will consult it with my professor, who will help me with it and only then I would know exatly say which ones values I will need.

I will do it probably in National Institute of Rheumatic Diseases in SR. But in our country many people do not even know what is SLE compared to other country. I think your country is more advanced and maybe the treatment is better. We have only a little publications about it and in another countries the knowledge of the disease is better. And I would like to change it for our country. So I would like to compare the laboratory results our patients and patients in UK. I would just needed to know if I can start with something like that... in cooperation with patients from another country... Of course it would be anonymous and probably through the questionnaire.

During the following month we definitely finish our plane about science work so I suggest that then I'll write again with the exact structure of what I will need and then you'll know better tell me if you know help me. Frankly I did not expect that someone wrote back and absolutely not that with a positive response because in SR people are not very willing so I am really pleasantly surprised! Thanks!!! Really thank you very much..

Denisa

[Hidden in reply to Denisa]

Inequality in care and research across the world is not acceptable and I'm sure many people would be happy to further your research when you are ready.

[Hidden]

As Whisperit has said I am sure there are people here with a wide range of experience that would be willing to help. As she said if you could break your questions down as we don't want to throw you off course or for you to have to go through unwanted material. Keep in touch.

[Denisa in reply to Hidden]

Hello "Johare". Thanks for your reply! A described it in Whisperit´s reply. You couldn´t imagine how I am glad that someone answer me. That you answer me! A hope that you could help me... Best wishes!!

[Space99]

I have Sjögrens Syndrome. I have high ANAs and hypothyroid. Before I was diagnosed i was hired by a woman who had Wegenener's Aggranulatosis. She was critical and unstable with it when her daughter was two and a half. She recovered and took "live in "jobs so she could look after her daughter. The daughter had Rheumatoid Arthritis as a teenager and was diagnosed with Lupus at 22 years of ages and went on the disability Pension. She died at 37 with a Myocardial infarction. Every organ in her body had been affected by the Lupus or the drugs used to treat it. There were many emergency trips to hospital eg. Pulmonary Embolism, Brain and heart problems. She had spine and knee surgery and often used Canadian crutches. She rotated through all the drugs used to treat the disease. At one stage they had run out of drugs that she didn't throw bad reactions to. They trialled her on Aspirin and she got bad tinnitus . Lupus makes people hypersensitive to drugs. She signed herself out of hospital all too often. At one stage the mother wanted me to supervise the IV treatment at home( I refused) so she did not have to go to hospital. I remember towards the end she was on Cortisone and had five different strains of Pneumonia. The mother signed a restraining order to keep her in hospital as well as sedation. She tried overdosing twice. The stays in hospital at a pain clinic was where she met her few friends. She went to a psychiatrist . The mother gave up work to care for her and was financially disadvantaged for doing so. She willed her body to Science..

I think in the end she was sick of hospitals and just wanted to be at home. She said if she had had cancer she would have been given far more back up.

Don't know if any of this helps. Most would not be as badly affected as this girl .

[Denisa in reply to Space99]

It's a very sad story.. and I'm really sorry. Nevertheless she was truly a great fighter! I very much wish to have finally managed to find a cure for these difficult diseases to completely cure. I had the disease in my family too...

Thank you very much for your reply... I really appreciate it. I would like you to keep in touch if you want, I think you could help me. I keep my fingers crossed and wish you all the best (as much as possible) ....with love Denisa

[Petrof]

Hi Denisa. I am very happy to help too when you are ready.

[Denisa in reply to Petrof]

Oh, I don´t believe it! You're all such great people. Thank you very much. I look forward to it... when we are ready I will get the detailed description for you! Have a nice time!