Irony

[Richmi]

Anyone find it ironic that so many are being diagnosed with Raynaud's and Scleroderma and no real cures to date? Am told that 200,000 patients added every year, yet nothing has been done. When do you suppose the medical industry will have a remedy or cure. Better yet, when do you believe the medical industry will know what causes this? If this were AIDS or some infectious disease like Zika, it's guaranteed modern medicine would know something by now.

[zenabb]

Sorry to say that you are quite wrong. There is a lot of research and a lot of people participating in research. It was started by Anne Maudsley, until then it was quite unknown. She had Raynaud's and Scleroderma herself and for decades battled to bring it to the fore and used fantastic methods to fund raise when few were interested. But Many scientists have are now working hard and the more it goes the more it is realised how complicated it is. I would you offer your help to your rheumatologist towards any research.

[gindy]

It's underfunded for sure... I personally volunteer to a few different studies, that's vital to research is to have is guinea pigs 😁

Get volunteering, it's easy to offer yourself up. Your rheumy will likely be looking for guinea pigs right now 😉

[cowhide]

There are lots of diseases for which there is no cure - for example, Alzheimer's. It is harder for a rare disease as there are so few patients for proper trials and research. It is also hard for some of us who might be willing to help with trials as we cannot easily get to places like the Royal Free where much of the work is done.

Although new patients are being 'added' they are disappearing off the top too! (Not only from scleroderma - related mortality). As I understand it, our prognosis now is vastly improved when compared with say 20 or even 10 years ago, even if just because better monitoring picks up complications earlier.

[Thelma]

I predict that it'll be a very long time before a cure is discovered. Look how long research has been devoted to diabetes, many cancers and other ailments for decades upon decades. However, since my diagnosis in 2008 for Systemic Scleroderma with lung/heart complications and Raynauds, I have seen a level of growth to better knowledge, more fund-raising to research and support, support group meetings, newsletters with expansions, medical staff and hospitals becoming more familiar, compassionate and sensitive to the Raynauds and Scleroderma plights. I believe if each of us tries to stay involved and focused to learning, applying healthy measures and staying as stress-free as possible, we can live more comfortably with our conditions. I often reflect back to two people from my hometown that were stricken with cancer back in the mid 60s - they also happen to be cousins; they've endured mounds of surgeries, however, they're still living quality lives today in their late 70s and the other one is in their mid 80s. The one in her mid-70s babysists her great-grandchildren from time to time - and like 5 of them at one time with vigor and joy. Those type folks help to give us hope and more determination to life our lives as best as possible.

[Marlew1997]

Hello all. I am in the US- Texas. I'm female & 46. Had a routine physical a year ago & the blood results said I tested + on ANA. I asked what is was & my doctor said she didn't want to alarm me because many have a + ana & it could simply be an infection of some sort. Has anyone ever heard that before?

Well, she said I should see an RA & they could narrow it down. I did so & my ana came back as 80 which he said was borderline?? Borderline what?? So I 've done lots of reading up on autoimmune & SCL & it's not pretty but what I did come across was a You tube video of a man who was diagnosed with advanced SCL. All the meds were making him sick & he turned to a holistic doctor who put him on a strict food plan. He had to fast for up to I think 2 weeks or 30 days then slowly reintroduce certain foods but the main thing was this whey water. It's the runoff liquid from the cheese making process. Aparently it's golden for healing! Also he had to eat a lot of fermented food. Kamichi is one. READ UP IN THIS!

He did a complete 380! Unbelieveable!

Hope this reaches out to anyone who feels hopeless such as this man did!

As for me.......the RA said he wanted to see me back every 6 mos to check my labs. He said I was full of inflammation & prescribed a week supply of Prednisone to see how it made me feel. I felt great of course then he prescribed a bottle of Hydroxychloroquine. Both anti-inflammatories. I'm not taking either but do on occasion.

What I'm suffering with is stiffness in the morning & something happened to my hands a year ago. All of a sudden they burned as if I'd been outside doing yard work with a wooden rake & almost as if they had lost their natural moisture. Was very strange. My husband thought it was bcuz I'm always in the kitchen in water but i keep lotion on or use gloves. Then when winter came, my fingers became very sensitive to cold.

I believe that my diet has had a lot to do with what has happened to me. I have a terrible sweet tooth for one. After the RA told me that my body was full of inflammation, I went to a Gastrointerologist for another issue; found out thru an endoscopy & biopsy of errosive ulcers in my stomach that I had Helibactor Pylori bacteria. Unsure how long I had it but it certainly wreaked havoc on my system causing lots of inflammation thus what the RA was saying. And he had no idea that i was suffering with acid reflux for years.

So I immediately put myself on an anti-inflammatory diet and began exercising, walking for 30 mins 5 days a week along with light weight lifting & dancing. All at my home. No gym. I lost over 20lbs in less than 3 mos. I felt amazing. I wasn't experiencing the stiffness in the mornings & could thing more clearly, was less tired & had lots more energy.

I cut out coffee, sugar, milk & flour products & drank smoothies, ate hearty salads & every morning I drank a combination of 8oz hot water with 2 tbsp local honey, heavy dash of tumeric & ceyenne pepper & a pinch of black pepper. Read up on this! There's so much more to say but little time!

Then the holidays came along (3 of them!) & I fell off the wagon. Such a blow & let down because I was on a get healthy roll!

So I can tell you I feel nearly as bad now as I did before I began my Get healthy journey. You see, food and exercise is what helped me.

You have to mentally prepare yourself to make the changes. I'm a wife & mother so I have to do it for myself & my family. I look forward to hearing you stories so please share!

God Bless & good luck on your Get Well Journey!

Robyn

[marilynmcl]

So happy to read your story Robyn....unfortunately for myself I am unable to do the exercises as I have severe osteoarthritis in both legs with fractures to my vertebrae and 3 types of lung damage so breathing and exhaustion is on my list..I did go down two dress sizes through weight loss, but not from choice, I just lost my appetite for anything edible so lived on water for a few months with just the minimum of bites of food. I also have narrowing of my oesophagus so anything I eat is painful to swallow. I am glad that you have found a relief of sorts for your ailments but I don't think they would help me...we are all different in our illness.

Good luck going forward Robyn and hope you keep getting better!

[tamara00]

Marilyn Mclaughlin, I also have esophageal narrowing and a Schatzki ring. My gastroenteroligist did an upper GI and stretched out my esophagus. I know it's a temporary fix, but it definitely helped, that and omeprazol. Have pleural effusions and spots on my lungs that come and go with breathing difficulty , unable to walk stairs and distance. Two kidney nodules, and recent blood work that indicates possible autoimmune billiary cirrhosis. Uncertainty is the most difficult part of Systemic Scleroderma.