Scleroderma is a rare disease, so a health the June awareness month is a great way to share information. An autoimmune disease with treatment, but no cure, Scleroderma affects about 300,000 people in the United States.

Scleroderma means hard skin and affects the connective tissues leading to inflation, scars and thickening of skin. The most common areas of  skin that are affected are the of elbows, fingers and face. If this disease is diagnosed in its early stages, there is less damage and less serious symptoms. It is important to know the symptoms of Scleroderma because as with many autoimmune diseases, diagnosis can be difficult.

Symptoms

• Skin changes – swollen fingers and hands, puffy skin, thick patches of skin, especially on the fingers, tight skin around the hands, face or mouth. Skin may look shiny, and movement may be restricted.
• Raynaud’s phenomenon – the small blood vessels in the hands and feet are affected by cold or stress, which causes numbness, pain and/or red, blue or purple skin.
• Red spots on the fingers, palms, face, lips, or tongue.
• Loss of the skin’s ability to stretch.
• Itchy skin.
• Fingers are curled.
• Digestive problems – heartburn, GERD, or trouble swallowing food.
• Fatigue.

Types of Scleroderma

Children can develop Scleroderma and it most often Localized, which means it only affects the skin. The most common symptoms of Localized Scleroderma are Morphea, which are oval shaped skin patches that have a purple border and white middle and Linear Scleroderma, which are bands of hardened skin usually on one side of the body.

Systemic Scleroderma affects your skin, blood vessels and internal organs. It occurs suddenly and can get worse quickly within the first two years. There are subcategories of Systemic Scleroderma depending on what area of the body is affected.

Diagnosis

Blood work, biopsies and a thorough skin assessment are some of the tests done to help diagnose this disease.

Treatment

Scleroderma is treated with various types of medications depending on the area of the body or the organs affected and physical therapy. Sometime surgery is necessary.

Share the Information

Spread the word and raise awareness by sharing this post, by liking the Scleroderma Foundation page on Facebook and by sharing your story if you have been diagnosed with this disease or know someone who has.

Learn more about Scleroderma from the Scleroderma Foundation.

Is it possible to get pain relief when you have Fibromyalgia? I wondered that when I was first diagnosed with Fibromyalgia. Finally I had an answer to why I hurt so much all of the time, but my next question to my rheumatologist was, “Can you cure me?” I guess he was used to hearing this quite often, so he  explained that he could help me relieve the pain, but that there is no cure to this disease.

He uses various forms of Fibromyalgia Treatments, but first he had to know more about the pain I had and other symptoms. Because I have other medical conditions, he had to take those into consideration with his treatment too. He asked me detailed questions about where I felt pain in my body and the type of pain and when I had it. He asked about headaches, memory problems, feelings of sadness or anxiety and stomach issues.

He also took blood work to test for autoimmune diseases, arthritis and to check my blood count, etc. My treatment wasn’t decided upon in one day, or even one year. He treats me depending on how my symptoms act up and if there are any changes.

Basically though, my pain relief comes in the form of prescription medications and trigger point injections. My doctor also recommends stretching and other mild forms of exercise, relieving stress, and joining a support group.  He had prescribed pain medication in the past, but I no longer use it. I’d rather be alert and feel some pain, than feel drugged and not be able to enjoy my life.

This is a sponsored post. All opinions are my own.

Fester, long time radio personality with the MJ Morning Show has been diagnosed with Myasthenia Gravis. His symptoms, which began suddenly, were droopy eyelids, double vision and difficulty swallowing. Shortly after they began, he was admitted to the hospital and in ICU.

Fester, who is known for his humor and big heart, went from feeling fine to the ICU in just a day or two.  His treatment consists of plasmapheresis now and he hopes to return to the MJ morning show soon. He was able to share a bit about what he’s learned about Myasthenia Gravis and give his fans an update on his condition on a video.

The MJ Morning Show is based out of Tampa, Florida and airs on the following radio stations:

- 93.3 FLZ (WFLZ – Tampa, FL)
- Z1077 FM (KSLZ – St. Louis, MO) [airs on a one-hour tape delay]
- 97.9 Kiss FM (WFKS – Jacksonville, FL)
- Kiss 95.1 FM (WBVD – Melbourne, FL)
- The Beach 98.9 (WBCG – Punta Gorda, FL)
- Star 94.7 (WSYR – Vero Beach, FL)

It is also available on the IHeartRadio app.

Although I’d never wish ill on anyone, the news of Fester’s Myasthenia Gravis diagnosis, has brought light to a medical condition that is very rare. If I were a betting woman, I’d say that Fester will promote information about this disease on the radio show and in other areas. I wish him well.

I’d love for the medical profession to take note – there are ways to brighten up my doctor appointment! Since I have many doctor’s appointments, I’ve seen lots of doctors’ offices and met many staff members. Some visits are pleasant, some are awful and some are actually fun.

Tips To Brighten Up A Doctor Appointment

1. The receptionist should say hello to me when I sign in (or nod to me if she/he is busy on the phone or with another patient) A smile just makes you feel welcomed.
2. Have current magazines in the waiting room. Include subscriptions to various types. It’s not fun to sit there for an hour or two with a golf magazine from 1999.
3. Be sure that the waiting room has comfortable chairs. Lots of people going to a doctor’s office, don’t feel well. Don’t add to their discomfort with hard or sagging chairs.
4. Staff should wear name tags and introduce themselves. It feels awkward to tell an unnamed person that I have hemorrhoids.
5. Nurses and medical technicians should wear neat and clean medical scrubs. I always wonder if someone remembered to wash their hands if their clothes look dirty.
6. Ask me how I’d like to be addressed. Don’t assume I feel comfortable being called by my first name. (I do, but a lot of older people don’t.)
7. Have some reading material in the medical office (read #2). Most of the time, you’re going to be waiting a while for the doctor to come in after you’ve seen the nurse or medical technician.
8. Don’t act like you’re in a rush, even if you are. Please give me the time I deserve in your office. I may have questions or  problems that I need to talk to you about, Doctor. It may take me a while to warm up to you.
9. If  you’re going to explain something complex to me about a prescription or a treatment, provide me with something in writing so I’ll remember it. Be sure I can understand your writing, or better yet, have printed copies ready.

Now I don’t expect every doctor’s office to do everyone of these things, but it sure would make me and other patients happier. Consider your patients’ comfort and be respectful. I bet you’ll have more referrals. Oh and I’d love it if the staff wore the same color or same theme scrubs on specific days. That makes me smile like a kid who gets a sticker after a shot.

This is a sponsored post. All opinions are my own.

June is Myasthenia Gravis Awareness month and for 2011, the  main focus is “Uniting for a Cure… Together we are Stronger.” The Myasthenia Gravis Foundation of America is asking us to help share information about this disease and to help find better treatment and ultimately a cure.

As someone who has had Myasthenia Gravis for 8 years, I’m always willing to do what I can to help this organization. Plus, since I know that even medical personnel often do not know what MG is, awareness is very important. In fact it can save lives. When someone with MG goes into a crisis, they may not be able to speak or let anyone know what is happening with them. Everyone from first responders to surgeons needs to recognize the symptoms of Myasthenia Gravis, how to treat someone in crisis and what medications can help or harm.

I’ve written about what my life is like with Myasthenia Gravis. It gives you a picture of some symptoms people may experience. I hope that you’ll take the time to read it.

The Myasthenia Gravis Foundation of America describes MG as:

Myasthenia gravis means “grave muscle weakness.” MG affects voluntary muscles such as those in the arms, legs, eyelids, mouth and those muscles used for breathing; the disease is characterized by general fatigue. Currently, there is no cure for MG, but there are effective treatments.

My first symptom of having MG was a droopy eyelid, which quickly moved to weakness in other parts of my body. I have had a thymectomy within the first 6 months of being diagnosed. I take Mestinon and Cellcept and am seen by a neurologist who specializes in MG through the MDA. I have good days and bad days and have learned my limits. Some days I need to use a scooter to get around, some days I can walk around a shopping mall. The heat of Florida does a number on me, so I stay indoors often, or go out in the evening.

MGFA’s mission is to find a cure for myasthenia gravis and closely related diseases, to improve treatment options and provide information and support to people with myasthenia gravis through research, education, community programs and advocacy.

Please support Myasthenia Gravis Awareness Month by sharing this post, by volunteering, by making a donation, and by being an advocate.

I’ve learned the hard way that weight loss isn’t easy especially when you’re limited in your ability to exercise due to chronic illnesses. Although I’ve cut down on my calorie intake and walked, not being able to exercise on a constant basis makes it even more difficult to lose those extra pounds and inches.

A weight loss plan includes burning more calories than you consume and and some type of  physical activity in your daily routine. A good friend of mine who has Fibromyalgia, has been successful in losing weight. First, she saw her doctor to talk about her goals and got a check up. Next she included her rheumatologist in her effort. He was able to provide information on the kind of exercise that would be beneficial to her, especially physical activity that wouldn’t cause more pain.

Image by o5com via Flickr

Her exercise routine began with yoga and stretching. She learned to listen to her body. If she felt pain, she slowed down, massaged the area or stopped if need be. Next came walking. Being outdoors helped her to feel more positive. She saw people and said hello to them. Soon they became walking buddies.

Shortly after her walking increased, she joined a gym that her rheumatologist recommended. The trainers were familiar with Fibromayalgia and exercises that helped lessen pain and help with weight loss. Soon, she was doing more cardiovascular exercises. She alternated days with water aerobics.

She chose to follow common sense with her diet. She read about calories, fat, sodium and decided to eat more fruits and vegetables along with more fish and poultry. She included protein supplements to improve her metabolism and help regulate her appetite. As she changed her diet, she found it more appealing, finding different fruits she had never eaten before. Instead of potato chips, she ate carrot sticks with a small amount of low fat salad dressing. It seemed as if her taste buds were changing!

Within one month, my friend lost 10 pounds. She does not look at this as a diet or exercise program, but as a lifestyle change. She’s an inspiration to many!

This is a sponsored post. All opinions are my own.