Being an advocate for bone and joint pain and personally living with osteoarthritis osteonecrosis and spondylolisthesis pain .
I saw our community struggle in new and ways besides living and dealing with daily pain.
People suddenly couldn’t access routine care because of lockdowns, fear and added anxiety.
They became more isolated than ever before. They and their family members faced job losses and financial hardship.
As an advocate for arthritis and a facilitator for my local LIVE YES Connect Group, I had to cancel or postpone in-person programs and events.
But on the plus side we went virtual on Zoom
Some members and their families faced added strain, whether dealing with virtual school or safety concerns for loved ones in nursing homes.
It’s a year most are happy to see come to an end.
But as a person with pain, I am always compelled to find silver linings. Even in the mist of challenging of times.
In 2020, I got to travel to Washington D.C participate in a focus group and then speak on Capital Hill.
I met some fantastic people from our state representatives to other leaders and advocates who work so hard to create a strong support system for so many causes and conditions.
I got to stay in a great city and tour the beautiful historical city of Washington D.C
We made great strides in accessibility, as health care system finally embraced telehealth and more companies allowed remote work.
Many disabled now gave hope to possibly getting a part time job working from home now because we see it is doable.
We seen a President work tirelessly to get pharmaceutical companies to create a vaccine quickly that will be safe for the USA and world.
We gave witnessed the power of science and innovation with the development of promising treatments and vaccines.
We saw our neighbors and communities come together to support one another in their time of need.
Despite the news only showing negativity there was a lot of positive happening.
2020 shown how resilient we are. And to never lose faith. Be grateful for everyday.
I don’t know what 2021 will bring;
I’m hoping it will be a fantastic year.
I just want to Thank you for your support, and following me on IG, Blog, and all social media platforms I promise to bring you current and uplifting information in 2021 and I wish you all a safe, healthy, prosperous and happy new year
Several states have officially proclaimed today as Osteonecrosis awareness day this past year a few more states came on the awareness train. And by next year God willing all 50 state’s as well as the US Virgin Islands and Puerto Rico will as well.
I will post the entire list later
But for now – Below are some posts and info
Many requested masks as so many cannot find them , so I contacted a local shop in my area and we made these two designs. The mask are washable
I don’t get paid anything for or a portion of the masks just doing this as a way to help those wearing a mask support the cause of Osteonecrosis aka Avascular Necrosis.
If you wish to purchase here is info. And they ship worldwide
They are closed on Sundays and Holidays
3600 Schotten Road
Hubbard Ohio 44425
Some individuals get ONJ
Osteonecrosis of the jaw, commonly called ONJ, occurs when the jaw bone is exposed and begins to starve from a lack of blood. Most cases of osteonecrosis of the jaw happen after a dental extraction. … ONJ is much more common in those patients who use these medications for cancer of the bone treatment.
Most patients with ONJ who are taking antiresorptive therapy for osteoporosis can be healed with conservative treatment. Surgery is not usually required and could contirbute to the poor bone healing.
Good oral hygiene and regular dental care is the best way to lower the risk of ONJ
Osteonecrosis of the jaw is a condition in which an area of jawbone is not covered by the gums, a condition of poor healing. The condition must last for more than eight weeks to be called ONJ. When the bone is left uncovered, it does not receive blood and begins to die. ONJ most often develops after an invasive (surgical) dental procedure such as dental extraction. ONJ also may occur spontaneously over boney growths in the roof or inner parts of the mouth.
ONJ has occurred in patients with herpes zoster virus infections, in those who are undergoing radiation therapy of the head and neck (radiation osteonecrosis), osteomyelitis (bone infection), and in persons taking steroid therapy chronically.
Patients taking antiresorptive medications to reduce their risk of bone fracture also may rarely experience ONJ. Why some patients taking antiresorptive medications get ONJ is unknown. It may be due to a decrease in the bone’s ability to repair itself; a decrease in blood vessel formation; or possible effects of infection.
There is no diagnostic test to determine if an individual patient is at increased risk for ONJ, but some factors are known to raise the risk in very rare circumstances. The condition itself is diagnosed only by the presence of exposed bone, lasting more than eight weeks. Patients typically complain of pain, which is often related to infection, soft tissue swelling, drainage, and exposed bone.
Most patients with osteoporosis who develop ONJ are treated conservatively with rinses, antibiotics, and oral analgesics. Studies have shown conservative treatment to be effective. There are case reports of the use of teriparatide in management of ONJ.
Rheumatologists are specialists in musculoskeletal disorders including osteoporosis and therefore are best qualified to review the risks and benefits of antiresorptive therapy for osteoporosis. They can also advise patients about the best treatment options available.
**Osteoradionecrosis is bone death due to radiation. The bone dies because radiation damages its blood vessels.
Osteoradionecrosis is a rare side effect that develops some time after radiation therapy has ended. It usually occurs in the lower jaw, or mandible. The lower jaw is at risk of osteoradionecrosis because it has a limited blood supply. Very rarely, osteoradionecrosis can start in the upper jaw, or maxilla.
Doctors usually classify osteoradionecrosis based on what tissue it affects, if it responds to treatment and if it has caused a fracture. They give osteoradionecrosis a grade from 1 to 3, usually as a Roman numeral (I, II or III). They use these grades to plan treatment.
Osteoradionecrosis is caused by radiation therapy to the bone. It may develop years after radiation therapy for head and neck cancers.
The risk of developing osteoradionecrosis increases when the dose of radiation received is greater than 60 grays. It is also higher if the bone treated with radiation is exposed.
There is also a higher risk of developing osteoradionecrosis if a dental exam and necessary dental repairs aren’t done before radiation therapy. People with poor oral hygiene before or after radiation therapy are also at higher risk. So are people who develop dry mouth after radiation therapy.
Damage or trauma to the jaw after radiation therapy, especially within the first year after treatment, can also increase the risk for osteoradionecrosis. Damage or trauma can be caused by:
- tooth extraction
- cancer surgery or biopsy
- denture irritation
In rare cases, osteoradionecrosis may develop even if there isn’t any trauma or damage to the mouth, teeth or jaw.
Symptoms can vary depending on the grade or extent of the osteoradionecrosis and include:
- a sore, or ulcer, in the mouth or on the jaw
- difficulty opening the jaw, or trismus
- an abnormal opening, or fistula, between the jaw and the surface of the body
- less feeling in the mouth or jaw, or even a complete loss of sensation in the area
- teeth that aren’t aligned properly, which is called malocclusion
- jaw fracture not related to an accident or other trauma
- exposed bone inside the mouth
- bone sticking out through the skin, which is called sequestrum
Exposed bones and sequestrum are most often found under the jaw.
Report symptoms to your doctor or healthcare team as soon as possible.
Your doctor will try to find the cause of osteoradionecrosis. This usually includes doing a physical exam, including a complete head and neck exam. Your doctor may also review your medical records to find out the total dose of radiation you received and the area that was treated.
You may also need the following tests:
- x-ray of the whole jaw
- CT scan
- biopsy of the area to check if the cancer has come back or a second cancer has developed
Find out more about these tests and procedures.
Your healthcare team will take steps to prevent osteoradionecrosis. The following measures should be taken before and after radiation therapy.
Before radiation therapy begins
Visit your dentist for a thorough dental exam and teeth cleaning before you have radiation therapy. If you need to have any teeth removed or cavities filled, do so before radiation therapy.
You should also start using daily fluoride treatments. Talk to your dentist or healthcare team about these treatments.
During and after radiation therapy
Be sure to practise good oral care before and after treatment. Keeping the teeth and gums healthy is important for proper healing. Also eat a healthy diet, including foods and beverages that are low in sugar.
Have regular dental exams. Be sure to have any cavities filled or infections in the mouth treated as soon as possible. If a tooth needs to be removed, wait until after radiation therapy is complete.
Your dentist or healthcare team will recommend fluoride treatments to help prevent cavities. If you have dry mouth, they will also suggest ways to replace saliva and keep your mouth moist.
Once the extent of osteoradionecrosis is known, your healthcare team can suggest ways to treat it. You will also be given antibiotics if there is an infection in the bone. Other treatment options may include the following measures.
Your doctor may need to do surgical debridement. This means removing dead or infected tissue from around a wound. Dead, or necrotic, bone may also need to be removed. This is called sequestrectomy.
Depending on where osteoradionecrosis develops and how far it progresses, your doctor may need to do surgery to help restore the area.
This may include microvascular reconstructive surgery to restore blood flow to the area.
Bone grafts may be needed to replace the sections of the jawbone that are removed.
Soft tissue grafts can be used to replace muscle and other tissues that have been removed. You may also need dental implants if teeth are removed.
Hyperbaric oxygen therapy
Hyperbaric oxygen therapy involves breathing pure oxygen in a pressurized room. It is done in a special chamber where the pressure inside is higher than the normal pressure of the atmosphere.
The higher pressure allows more oxygen to get into your blood, which can help heal damaged and infected tissues.
Hyperbaric oxygen therapy is used in combination with wound care and surgery.
The treatment plan often includes 20 treatments before surgery and 10 more treatments after surgery.
This treatment plan may be adjusted based on your personal situation and how well the osteoradionecrosis responds to the hyperbaric oxygen therapy.
After you finish radiation therapy, your healthcare team may recommend that you have hyperbaric oxygen therapy before you have any teeth removed.
Hyperbaric oxygen therapy may not be available in all centres.
The good news keeps rolling in
Rare Disease Day is February 29 usually 28 on non leap years.
So as you know I have been working very hard on November 29 being National – Avascular Necrosis Osteonecrosis awareness day and all states have come on board so far but still waiting to hear from maybe 10 states.
They are doing all they can. And I am so pleased many states have issues proclamations for November 29 and many still are in the process.
Today The State of Arizona sent a proclamation for rare disease awareness we got the entire week February 20-27
And they will also be recognizing November 29
Hard work pays off
Thank you State of Arizona
Founder Avascular Necrosis Osteonecrosis Support Int’l
Radionuclide bone scan. This nuclear imaging technique uses a very small amount of radioactive material, which is injected into the blood to be detected by a scanner. This test shows blood flow to the bone and cell activity within the bone.
A bone scan is a nuclear imaging test that helps diagnose and track several types of bone disease. Your doctor may order a bone scan if you have unexplained skeletal pain, a bone infection or a bone injury that can’t be seen on a standard X-ray.
Why it’s done
Images of bone scans depicting hot spots
If you have unexplained bone pain, a bone scan might help determine the cause. The test is very sensitive to any difference in bone metabolism. The ability to scan the entire skeleton makes a bone scan very helpful in diagnosing a wide range of bone disorders, including:
Paget’s disease of bone
Cancer originating in bone
Cancer that has metastasized to bone from a different site
Infection of the joints, joint replacements or bones (osteomyelitis)
Impaired blood supply to bones or death of bone tissue (avascular necrosis)
Hi I’m Deborah Andio the founder of Avascular Necrosis Osteonecrosis Support Int’l and I am honored and proud to say another state is on board recognizing Avascular Necrosis -Osteonecrosis
A great big thank you to Governer Kim Reynolds the Governor of the state of Iowa for not just recognizing Avascular Necrosis Osteonecrosis as Rare but issuing the proclamation for Rare Disease Month in February 2020 and also Honoring and sending a proclamation for Avascular Necrosis Osteonecrosis day November29.
We are moving along state by state
Alabama is giving us for rare disease awareness the week of February 20,2020 to February 27, 2020 as Avascular Necrosis Osteonecrosis Awareness Week!!!
And on November 29 Avascular Necrosis Osteonecrosis Awareness Day!!
Thank You to Congressman
Sean Patrick Maloney of NY